Strengthening Disability Advocacy conference 2014
Champions of change

4 & 5 August @ Melbourne & Olympic Park Convention Centre

Let’s talk about sex

When

Tuesday 5th August, 2014: 3:30am - 5:00am

Where

River Room

Speakers

Dean Dadson, Project Officer, Self Advocacy Resource Unit

Dean Dadson has worked in the disability field for more than 20 years. Dean has worked at the SARU on various projects, including the Act Resources Guide project since February 2013. Prior to that Dean worked at the Department of Human Services for over 10 years in various roles as a senior project officer. Dean … Continued

Photo of Dean Dadson, Project Officer, Self Advocacy Resource Unit

Dr Patsie Frawley, Research Fellow, La Trobe University

Patsie has been working alongside people with an intellectual disability for over twenty-five years, as an educator, advocate, policy advisor and researcher. Her research focus is on sexuality and relationships, abuse prevention, rights and self-advocacy. Through this work she has developed inclusive and collaborative approaches to researching with people with an intellectual disability. Patsie has … Continued

Photo of Dr Patsie Frawley, Research Fellow, La Trobe University

Dr George Taleporos, Executive Officer, Youth Disability Advocacy Service (YDAS)

Dr George Taleporos completed his PhD in psychology investigating disability and relationships and has expertise in disability reform and youth engagement. He has held managerial roles in advocacy and played a leadership role in the development of individualised and self-directed support. George has provided policy advice in a range of areas including DHS standards, capacity … Continued

Photo of Dr George Taleporos, Executive Officer, Youth Disability Advocacy Service (YDAS)

Glynn Evans, Team Leader of the Department Of Human Services ASIST / Outreach Program

Glynn is passionate about ensuring that people with a disability are given the same opportunities and experiences in life as everyone else in the community. Over the past 15 years, glynn has been working with 130 people with disabilities living in Gippsland who have been involved with the ASIST outreach program. This program provides skills … Continued

Photo of Glynn Evans, Team Leader of the Department Of Human Services ASIST / Outreach Program

Christian Astourian, Program Manager of the Diversity and Disability program at the Migrant Resource Centre North West (MRCNW)

Christian is fluent in Italian, French, Greek and English which he has put to practical use in the management of the Disability and Diversity program where he has developed a deep understanding of cross-cultural awareness.  He runs his own business as a Disability Consultant and his specialist skills means that his knowledge is often required … Continued

Photo of Christian Astourian, Program Manager of the Diversity and Disability program at the Migrant Resource Centre North West (MRCNW)

Greg Axtens, Self Advocate

Greg is a long-time activist around the issues of sexuality and people with a disability. He is a Reinforce and Disability Justice Advocacy committee member.

Photo of Greg Axtens, Self Advocate

Sharon Granek, Coordinator, Disability Advocacy Resource Unit (DARU)

Sharon has previously worked in various capacities always in the field of diversity including case management, residential and respite care, policy development, housing, education, training and employment, public health and advocacy.

Photo of Sharon Granek, Coordinator, Disability Advocacy Resource Unit (DARU)

Session Summary

Your accessible accommodation or mine? Get ready for a frank panel discussion about the ways people with a disability express their sexuality and needs within relationships. The covers are peeled back and the panel will look at challenges faced by people with a disability when asserting their right to a fulfilling life.

Dean Dadson, Self Advocacy Resource Unit (SARU), facilitates a panel discussion about sexuality, relationships and rights including issues people face, where to go for information and support and what to do if you are not getting your rights.

 

Audio podcast

Transcript

DEAN DADSON:
Welcome everybody to the lets talk about sex session. I’m Dean Dadson and i’m going to be facilitating the session today. The session really is a panel and audience discussion about sexuality, relationships and about rights. It’s also about the issues people face, people with a disability face when it comes to realising relationships, sexuality and their rights. It’s also about where do people with a disability go to to get some information about their rights and what to do if people aren’t getting their rights.

The way it’s going to work, we’ve got an expert panel here and i will introduce them in a moment. I would also like to say we love audience participation. If people have comments and questions throughout please don’t hesitate. We have three people here with roving microphones so if you have questions or comments you want to put to the panel please do that throughout and we will also have time at the end for questions.

I’m going to introduce the panel members and then it’s going to be followed by a short film, which will be captioned, on this side. Unfortunately, it doesn’t have any captions or subtitles on it and the video will show on that side.

Let me start off with Christian Astorian on my left. Christian is the program manager of Disability and Diversity at the Migrant Resource Centre, north west. Christian is fluent in Italian, French, Greek and English, which he has put to practical use in the management of the Disability and Diversity program. He’s developed a deep understanding of cross cultural awareness.

Christian also runs his own business as a disability consultant and his specialist skills means his knowledge is often required on a variety of committees. He is currently on the Advisory Committee for the Victorian Human Rights Commission, the Victorian governments Disability Services Commissioner board and the Federation of Ethnic Community Councils of Australia Disability Committee.

Next to Christian is Dr George Taleporas. George is manager of the Youth Disability Advocacy Service. George completed his pHd in psychology investigating disability and relationships and has expertise in disability reform and youth engagement. He has held managerial roles in advocacy and played a leadership role in the development of individualised and self directed support. George has provided policy advice in a range of areas including DHS standards, capacity building through peer support, individualised support packages and the implementation of the NDIS in Victoria. He is currently the manager of the Youth Disability Advocacy Service, a lecturer in disability and health at Deakin University and a regular contributor to the ABC disability portal Ramp Up which is sadly gone. Welcome george.

Next to George is Dr Patsie Frawley, Research Fellow at Latrobe University. Patsie has been working alongside people with an intellectual disability for over 25 years, as an educator, advocate, policy advisor and a researcher. A research focus is on sexuality and relationships, abuse, prevention, rights and self-advocacy. Through this work she has developed inclusive and collaborative approaches to researching with people with an intellectual disability. Patsie’s worked on some innovative programs including the living safer sexual lives, respect for relationships peer education program. That was a program that’s been run across australia and used to inform violence prevention programs for women with disabilities internationally.

Beside Patsie is Glynn Evans. Glynn is the Team Leader from the ASSIST Outreach program at Gippsland Department of Human Services. Glynn’s passionate about ensuring that people with a disability are given the same opportunities and experiences in life as everyone else in the community. Glynn works at the Department of Human Services in Gippsland with the ASSIST Outreach program and that program provides skills development, education with people with a disability.

Finally we have Sharon Granick Program Manager at Women with Disabilities Victoria. Sharon has worked for many years in community development in the field of diversity including case management, residential and respite care, policy development, housing, education, training and employment, public health and advocacy. Sharon has a Masters in human services and public policy. Sharon helped to establish and was the first coordinator of the Disability Advocacy Resource Unit. More recently she was a member of the project management team that oversaw the Voices Aginst Violence research project across sector partnership with the Office of the Public Advocate and the Domestic Violence Resource Centre Victoria. This investigated what happens to women with disabilities who have experienced violence in Victoria.

We have an apology from Greg Axton. He wasn’t able to make it today. Greg Axton is a long serving or a long time activist and self-advocate and his passion is around the issues of sexuality in people with a disability. So apologies from greg today.

I would like to start off thanking everybody for coming, the panel and thank you members of the audience. If we can go to this film and we will have a bit of a discussion about that afterwards. It goes for about 8 minutes.

(insert video)

Whilst that film really is about a gay man’s desire to come out, to be supported, to have a relationship, to have a sexual relationship i’d like to ask the panel members if there was a particular issue in that film that resonated or that was particularly important to each of you. Patsie would you like to start.

PATSIE FRAWLEY:
Okay sure. That’s what you get for looking at the facilitator.

(laughter)

There was a few points that I wrote notes about and of course when I first watched Richard’s story it reminded me very much of the stories that I’ve heard and worked with for many years now with people with an intellectual disability through the Living Safer Sexual Lives work.

As Dean said the key thing for Richard was about being gay and coming out. He also raised things about being a person with a disability and having sexuality and relationships recognised in your life.

The three things for me was that he raised the issue that he’d never been provided with any education while he was at school or any other time in his life that to get his sexuality in relationships recognised and brought out in the open so he could get support was wholly dependant on him. He said he had to have the confidence to do that. It made me think how hard it would be for people and I know it is for the people I work with to actually in like a formal planning meeting say by the way can we talk about sex. I would find that very difficult because sex and relationships are often very, very private things in our lives and we don’t sit around a table at a formal meeting and start writing things down about what we want to do and how we want to do it. That was another important thing.

And finally was his reflection I think. Unfortunately very often the only time that anyone wants to talk to him about sex and relationships or all they want to talk about is managing risk. He was a man who was wanting to talk about desire, about his particular interest in sexual relationships, going to a club. He wanted to talk about real experiences, not about managing risk. They’re some of the things that really came out for me that I think are very much the themes I have heard for the 20 odd years I have been doing work in this area.

Finally I guess the question is how far have we come.

DEAN DADSON:
Thank you Patsie, I might go over to Doctor George Taleporas for your comments.

GEORGE TALEPOROS:
I think that the disconnect between policy and practice is also very clear. I know in Victoria back in 2005 there was a lot of work that went into a document, had lovely cartoons on the cover. It was the DHS, lovely drawings of people out in the street, enjoying the sunshine and of course it was the DHS policy on sexuality.

The policy said lots of really positive things. It says people with disability have a right to express their sexuality, have a right to support to do this. But what was really obvious was there was no information about how. We’re almost 10 years on and I think we’re in the same space today. People have the right intentions and the policy says all the right things but when it comes to practical on the ground real support for people then it’s not really there.

DEAN DADSON:
Thank you George. Sharon could we get a comment from you please?

SHARON GRANEK:
I guess I will talk about a different area because I totally agree with what George and Patsie have said. One phrase used that really got to me was you’ll get over it, as a phase you’re going through. To me that rings parallel with women with a disability who may have a cognitive disability are never allowed to grow up. They’re not ever going to get over that phase but you will get over the phase of having homosexual feeling. That really resonated for me.

The other area of concern to me is we’re looking at sexual health rather than a healthy relationship. That’s brought out in the short video we saw, he was looking for a healthy relationship and that’s wonderful. We’ve got to think about skilling up workers to assist people with disabilities to find those healthy relationships.

A lot of people with disabilities don’t have the full expansion of life experiences that the general community experiences. It’s up to us to make sure that those experiences can be expanded.

GEORGE TALEPOROS:
And Sharon isn’t it also the unhealthy relationships too that every person growing up experiences all kinds of relationships. They’re not always the healthiest of sorts.

SHARON GRANEK:
It’s predictability of risks.

GEORGE TALEPOROS:
It was quite clear it was about being wrapped up in cotton wool.

SHARON GRANEK:
Exactly you’re right. How do you know what kind of relationship you want without stepping, treading the water, getting into the water and getting your feet wet? If you’re only ever exposed to a heterosexual relationship on TV how do you know your preference? If you have those experiences I think you’re right on there, it’s okay as long as you’re supported through an unhealthy relationship. As long as the support is there I think.

DEAN DADSON:
Christian do you have some comments?

CHRISTIAN ASTOURIAN:
Yeah there are good things that stuck with me about this video, one is the deny of basic human rights, about having the opportunity to experience a relationship. And to experience it in any form really.

The other thing that it makes me think when the guy was talking about being covered in cotton wool because very often we hear about people with disability being all protected but for so many different reasons. As a consequence of that it denies them of the experience in life. Also the idea of thinking that people with disability are not interested in those things.

DEAN DADSON:
Thank you Christian.

GEORGE TALEPOROS:
Or that we’re over sexed so you’re either not interested or you can’t stop so you need to be controlled. That’s me, anyway.

(laughter)

PATSIE FRAWLEY:
Also, I think with David Thomson the academic talking from Bristol, one of the things he said is there seems to be a sense of haves and have-nots in terms of relationships. As Christian said being sexual is one of the most human of expressions. It’s incredibly, it goes against everything we could ever think about to cut off that from certain people just because they have a disability.

I know for many people with an intellectual disability with whom I have spent most of the time talking about sex and relationships they might know other people in their families where they’re supported to grow up and have relationships and in fact encouraged to have the dream. Whereas as a person with an intellectual disability they’re told in no uncertain terms that’s not for you.

Of course we have a whole range of things that happen to people for example, the sterilisation of women with intellectual disabilities. That still occurs, that absolutely says that’s not for you. I think that the question is not about necessarily how do we support people to learn more so that they can be sexual, I think it’s more about how do we fully acknowledge the sexuality of people with disabilities through what we talk about, what we advocate for and how we try and shape policy and practice.

DEAN DADSON:
Thanks Patsie. I might pass over to Glynn Evans. I think one of the issues that you’ve all raised is around cotton wooling, about the dignity of risk of people being able to take risks. I don’t want to put Glynn on the spot but Glynn works for DHS. Glynn is our service provider representative. I wonder if you could talk about that risk and also talk about what resonated for that film for you.

GLYNN EVANS:
Sure on a positive note, it’s a good way to start, we actually run advocacy meetings within our service at DHS, Assist Outreach. At one of the advocacy meetings we have quite a few people from community residential units attend where we’re actually showing the AMIDA Know Your Rights video and relationships is one of the rights that people have.

We were talking about the right to have a relationship, and quite a few people in the CRU said yes they can have a relationship. We spoke about boyfriend and girlfriend and yep they can have a boyfriend and girlfriend and I’m thinking wow this is great. Your boyfriend can come and sleep with you in your bed, that’s okay. Everything went quiet and obviously that was a pretty horrific thing to say. It was pretty obvious in speaking further that most people in the CRU think that a boyfriend is somebody that we call a boyfriend and a girlfriend is a girlfriend and that may well be nice but unfortunately no sex and no physical touching and no privacy from what we can gather.

Also from that meeting, people expressed the need to have their own human relations women’s and men’s groups developed. We actually run them now and been running them for 8, 9 years. Within those groups people talk about sex. They actually talk about condoms and they talk about penises and talk about vaginas. There is a group of them here now and I know every single one of them knows how to put a condom on a penis because we practice that.

We actually watched that video last Tuesday I think. We spoke about lesbian relationships and we spoke about gay relationships and where do you go if you would actually like to become involved in a lesbian relationship. That’s right Liz you had some answers, so did some of the others within the group. So we are becoming more aware and we are speaking out and people are developing confidence but we have a long, long way to go.

GEORGE TALEPOROS:
Can I just add to that, I think that’s great you’re doing that and relationships are being spoken about. One thing that I think is sometimes an issue is that sex is presented to people with disabilities as something that can only occur within the relationship and the reality is that for a lot of people disabled or not sex happens in all sorts of places including disabled toilets. We need to recognise that. It’s not just about the normality, idea of relationships where sex occurs. Sex can also be something you do on your own in terms of masturbation and that sort of thing and porn. All that sort of stuff. We need to be as broad as we possibly can when we talk about sex.

GLYNN EVANS:
For sure. Can I just add I subscribe to Red the sex workers magazine, which is sent to DHS I might add. We use that magazine extensively and have spoken to most of the providers and they’ve given us pretty much an overview of what they have to offer. One of the members here today is supporting someone to access a sex worker. Not sure if he has done that but won’t put him in the spotlight. It’s been organised.

We’re very open and we do talk about a lot of inappropriate sexual activities as well. We’re involved with Patsie and the Living Safer Sexual Lives Program and with Sharon and the program Sharon has just been involved in.

GEORGE TALEPOROS:
Can a sex worker come to the CRU?

GLYNN EVANS:
Look sorry I don’t work in the CRU. That’s a good question, to my knowledge no.

GEORGE TALEPOROS:
Okay so why if that’s the home?

GLYNN EVANS:
I couldn’t agree more but unfortunately I can’t answer your question.

PATSIE FRAWLEY:
Sorry I just need to clarify something that Glynn said. We talk about inappropriate sexual behaviours and we’re involved in the program Patsie runs. It’s not about inappropriate  sexual behaviour. What I wanted to raise was that program which is called Living Safe Sexual Lives.

When Dean introduced me as an expert this afternoon, I felt a bit uncomfortable. Because there are a lot of experts in the audience who are people who have participated in the Living Safe Sexual Lives Program to become peer educators to use a Program that we have, which was developed from the twenty five stories of people with an intellectual disability.

The reason I raise that, it’s not a plug, it’s because of something that I think you said, that there’s a need to really think about the whole experience of sexuality and relationships that people have. It’s not a linear thing where you learn to put a condom on and learn to have a sex, you learn about a public place and there you have sex. We know it’s a lot more messy than that.

That’s why we developed our program using real life stories of people with an intellectual disability because those stories are real. They talk about things like sex in public places, sex in toilets, having to hide your sexuality from your family. They talk about abuse, they talk about gay and lesbian sex because that’s the real experiences of people.

We’ve found that using stories and then working with people with intellectual disabilities who then use those stories to speak to other people has been really powerful. None of it is made up, it’s very real.

It happens in a way that happens to everybody and then you can start to talk about things like risk, support and information, access and health, all those other important things. But it starts from a sense that really knowing sex and relationships is more often than not messy and all over the place and not linear and starting with rules and sticking with rules.

That’s something I’m very passionate about, developing and further exploring programs with people with disability that can work and that are based on reality.

GEORGE TALEPOROS:
Can I just add something because as an advocate I get very frustrated when we’re in situations where policy is all-good but then practice is often quite different. I think when we know for many people with disabilities CRU  at their home, yet they’re not allowed to make that choice about having a sex worker.

I think that’s an example of the difference between policy and what we’re doing on the ground. I did my research a while back in physical disability and often it’s around practical support for people like me around using a vibrator, support with positioning. These are things that the disability sector does not want to even consider or go near. But we need to start having these conversations because if we’re going to implement and make things practical we need practical changes on the ground.

DEAN DADSON:
Absolutely. Christian.

CHRISTIAN ASTOURIAN:
Yeah the other thing I believe in, it’s important, sometimes we need to make a distinguish between sex and relationship because they don’t always come together. Also when it comes to sexuality I think it’s very important we need to support people with disability to discover their bodies, to discover themselves and that can be very empowering experience. That can make a difference in our everyday life in the way we dealing with everything else in our everyday lives.

DEAN DADSON:
Thankyou Christian. What I would like to do is open up to the audience. If people have any questions, comments they would like to make we have roving mics here. Over the back first.

QUESTION:
Hi Martin Stewart here. I’m very, very concerned about the extremely damaging training that support workers receive in most agencies. When it comes to any access to sex workers if that’s what the need is the current training in a lot of the services is well, make sure you give us a call if that happens because we will advise them they need to speak to their relatives who are in fact in a lot of cases the problem. It’s a disgraceful state of affairs quite frankly.

DEAN DADSON:
Thank you. Anybody on the panel want to comment on that?

GEORGE TALEPOROS:
Martin that shows that the policy does not impact us. Who wants their mum involved in this, it’s not appropriate. We need to ensure that people have a right to independence and privacy. Privacy is important.

SHARON GRANEK:
I think for a lot of women with disability if they’re making an informed decision about wanting to have a sexual relationship they should be allowed to. I stress the word informed decision.

George brought up before having a unhealthy relationship as opposed to having a power relationship. Some men may use power over women with disabilities, they might in the man’s eye might look less attractive physically so it has bigger implications on the woman.

Some women rather than having good sexual health might be put on contraception, a long-term contraceptive injection so they won’t get pregnant. That’s got nothing to do with a healthy relationship. I think a lot more emphasis has been placed on allowing women to make informed decisions about the relationships they want.

One thing we’re doing at Women With Disabilities Victoria, we’re running some gender and disability workforce training for one of the major disability providers. That’s looking at all the issues looking at it through a gender lens, how women and men with disability experience life differently.

We have to look at how gender plays a really important aspect of our lives and what roles in our lives it’s given because of our gender. That’s having the workforce develop a program that’s currently a pilot. The feedback we’re getting from disability care staff has been amazing. They’re re-thinking the way they deliver that service that’s a really good thing I think.

PATSIE FRAWLEY:
Just one thing about training Martin, I used to run a lot of training for staff on looking at sexuality and relationships for people with disability. I was involved with the policy that George spoke about.

At the time it was quite a progressive policy because it was based on rights. It actually was modelled on a policy from the UK that had been very powerful and important in changing the way sexuality relationship rights were looked at for people with disabilities in the UK.

We spent 5 years developing that policy, going to meetings to get it developed. It was about to be sent out with me being the person to train the State on all the disability workers on how to implement the policy and literally the day before I had a phone call to say don’t go, you can’t run this training because the  powers to be have got a bit twitchy about it and they want to change it.

The change that they wanted to make was actually about the issue around sex workers and about people’s right to use sex workers. Ultimately that was changed and essentially took out of that policy that right about people making that choice about whether they want to use sex workers and how they might be supported to do that. Having said that far too much of the training that happens with staff focuses on that issue. There is many more issues we have to think about.

Since then I have learnt a really important message which is one way to change the way staff think is to challenge them much more directly about what their thinking is. We do that using the Living Safe Sexual Lives Program but it’s people with disability running the training, that has made a reasonable impact. It hasn’t shifted everyone’s thinking.

I would say there is work to be done by the disability advocacy sector to look at what is within policy at the moment and to get behind different approaches to changing the way staff understand their power I suppose and then understand their responsibilities.

DEAN DADSON:
Thanks Patsie. We have a question over here and then Jarad and a few others over here.

QUESTION:
My question is I’m a participant and if you’ve got participants that have come to you and said they’re bisexual so they like both how would you as trainers or workers how would you deal with a client that says they are bisexual instead of just being lesbian or gay, they like both?

GLYNN EVANS:
Sorry I didn’t get your name?

QUESTION:
Jenny.

GLYNN EVANS:
Hi Jenny. Look I would like to think that we have a very open forum in our groups. Whether you would want to participate in the group situation or whether you would be requesting one on one support, either would be an option. Within the groups we have an expectation that people will respect one another. We have rules,

we start off our groups with rules. The rules include confidentiality. We find that the people who participate in the groups benefit from knowing they’re in a confidential situation. They themselves, the members of the group have developed the rules. So it’s confidentiality, respect, non-judgemental and participation.

And if you’re a transvestite or bisexual and you like having sex upside down or inside out that’s your choice. Everybody within that group must show respect for one another to be part of the group. That’s an expectation of group members so you would be well received.

PATSIE FRAWLEY:
Just one other thing there I think there is also work to be done with the disability advocacy sector working with other rights based groups so GLBTI groups, in the community and I know that one part of Latrobe Uni which is the Australian Research Centre in Sex Health and Society have both research and practical work going on to support advocacy in those areas.

I think it’s about joining up and making sure disability is seen as part of those other areas of advocacy as well rather than thinking about it as a disability GLBTI issue. Let’s think about how we can support people with disabilities and the broader groups to understand, include and support the rights of people with disabilities as well.

QUESTION:
My name is Jarad I’m here on behalf of the Youth Disability Advocacy Service. We’ve talked about what we’re happy for people to do in the privacy of their own home and whatever, but if you tell somebody, any two people that it’s okay to have sex, sex is very different between whomever you talk to, sex might not be the same between me or George or the next two people.

So if you say to somebody with an intellectual disease or a cognitive impairment it’s good to have sex tonight with whoever they want, they end up to going to bed and they get something they really didn’t sign up for. Is there help? DHS have you got a program where you talk about what’s expected before the people are engaging in whatever.

I’m not just talking about sex, but enjoying sex. People often who have sex, I know the first time I had sex it was shit. If I wasn’t so dependant I probably wouldn’t have it again but for other people it might be really, really shit and they might never want to do it again. I’m just asking does DHS or different CRU’s and advocacy services actually talk about okay when you go to bed tonight this is what your expecting and this is what actually goes down?

DEAN DADSON:
Thanks Jarad does anybody want to make a bit of a comment on Jarrod’s comment and question?

GLYNN EVANS:
Would you like me to comment Jarrod?

Yeah.

It’s a pretty hard one to answer. We’ve all had good and bad sexual and relationship experiences I’m sure. Look once again I would like to think and we are a fairly open group, the group we run actually spoke about a similar topic so we decided to run a dating program.

We had a whole list of different questions that people wanted answered and just that. How do you approach somebody, how do I know that you’re interested in me, do I go up to you and say hello are you interested in me? Just basic questions like that. We actually wrote up this program and the guys participated in the men’s group and the women in the women’s group and then we shared our answers.

That would be an example of how we might help you to develop those skills. That’s pretty much once again a peer education program, drawing from all experiences of the members of the group. Perhaps you have something to add George.

GEORGE TALEPOROS:
I will just add it’s important that you have support around you or people you can talk to. I think that sex like you mentioned it’s about practice so you might have a bad experience and then you learn from that. You might have one better next time.

If you’re in a position where you have a support network where you can talk about that, if something happened that you were at risk then you can go and speak to your Doctor or someone that you can talk to. There are helplines out there I think as well that people can talk to if they have a bad experience.

DEAN DADSON:
Thanks George, Christian.

CHRISTIAN ASTOURIAN:
Yeah I think the most important thing really is the experience you have. Because all experience it can be very important in our lives. It doesn’t matter how good or bad those experiences are going to be. We have to help us to grow and to become really, who we want to be in our lives.

Of course I mean we need to avoid completely negative experiences if possible but at the end of the day I believe every experience it mean something. We can learn from it.

DEAN DADSON:
Thanks Christian, Patsie.

PATSIE FRAWLEY:
I want to add one or two things. I don’t necessarily believe every experience is a good and growing experience. There are bad experiences, there are experiences that are against the law, there is traumatic experiences. I think it’s really important that we certainly try to avoid those but also recognise they do happen.

In any education or information that we’re involved with supporting or talking with people about whether it’s a formal group or one to one or whether as a friend, a relative, a support worker, is that we ensure that people understand that they do have a right to say no and if they have experiences that is abusive there is something they can do about that.

We address this in Living Safe Sexual Lives by running groups where we have peer educators and co-facilitators. The co-facilitators are community professionals who work in services like Centres Against Sexual Health, Sexual Assault, Community Health Services, Women Health Services. Those peer educators in the room would be able to tell you a lot more than me.

The idea is to say I’m certainly not an expert on reproduction for example, I get very confused about what goes on and I wouldn’t be able to explain it as well as a community health nurse can. What happens in our group someone will ask a question about sexual health, reproduction, contraception and there is a community  health nurse there who can work with the peer educator to explain what that information is that person needs.

We also need to recognise that each and every one of us have different ways of learning. We learn through friends, we learn through formal stuff but sometimes we need one to one counselling or support. Most often in any person’s life stuff around sexuality and relationships will be one of the things that takes them to a counsellor.

One of the things I’ve been working on is trying to make sure that counsellors in community health services and other places are equipped to work with people with disabilities. People should have that opportunity to go along and have that talk and that support.

Yes, we won’t always avoid the not so good things and also the kind of not so exciting and wonderful experiences. As long as we can make them as safe and as self-determined as possible and provide support to people I think that’s what we’re looking for.

DEAN DADSON:
Before Sharon talks I just want to say sometimes in forums like this some of the issues raised can actually cause some distress for people. It’s really important for you to know that if you wanted to talk to anybody about any of the issues raised confidentially about where to go for some support, some assistance please come up to the SARU desk and Sue, myself and some of the panel members could also offer that support if necessary. Sharon.

SHARON GRANEK:
Just one other point going on from that what we’re doing with Women with Disability Victoria is try to promote the use of mainstream services rather than disability specific services. The talk we do at Women’s Disability Victoria, we’re about to develop a Health Services, Healthy Women package to skill up health care service providers to enable them to better include women with disabilities in their everyday services.

When I was looking at what we were delivering today, I went back to the State plan and two items I found really interesting and related to what we’re talking about now, the Department of Health is meant to continue providing home and community care, (HAC) services that responds to sexual diversity among people with disability.

As far as I know HAC services is delivered  by Local Government, that’s a mainstream service. Disability advocacy and other services needs to put pressure on DHS and mainstream providers to make sure that’s happening.

The other point that the Department of Health is also supposed to be delivering is building the awareness of service providers about the sexuality and gender diversity of people with a disability. Again the Department of Health has responsibility to make sure those mainstream service providers have much more awareness and can include people with disability to their services.

I think we need to move away from disability service specific providers to mainstream. That’s what the NDIS is about. Surely if people have got packages they want to be part of the mainstream not part of a speciality disability service.

DEAN DADSON:
Thanks Sharon. George.

GEORGE TALEPOROS:
I might just add while were talking about services, the Youth Disability Advocacy Service runs a website called a Youth Disability Rights.org.au. On that site we have a section about sexuality where you can learn about your rights in that area. Check it out.

DEAN DADSON:
Fantastic George. We had some questions still.

question:
Good Lord where to start. I’m going to be blunt. I’m 41, I’m pretty sure I’m still straight so I got that down packed. There just seems to be an assumption, if I want just a shag I could get that. But I want the whole package deal and it’s just assumed that if I want companionship and a relationship and a partnership and blah, blah the powers that be that run the services as such, will say oh, I know someone who has the same problems, meet blah, blah, blah. I’m like stop helping.

How does someone find a relationship, find the package deal when you have a brain injury and you have a disability? People just assume I should drop my standards. Why, why do I have to do that now?

DEAN DADSON:
Anybody in the panel, Christian would you like to comment?

CHRISTIAN ASTOURIAN:
Yeah. While I have knowledge in my professional experience in looking for the relationship or being in a relationship, it has a lot to do with the way I feel about myself. It’s all about really confidence, how confident you are in yourself to go out there to show the best of you and to attract other people in your life. I think it’s really the most important thing to have.

DEAN DADSON:
Thanks Christian, Patsie?

PATSIE FRAWLEY:
I don’t agree with that question. That’s part of it but there is a whole lot of other things that go on as you know in the lives of people with disability that are not about disability. They’re about societies view about disability.

It’s my view that the issue of sexuality and relationships doesn’t sit away on its own. It’s a part of the whole issue of how people with disabilities are seen in the community, how we recognise people with disabilities. I strive to recognise people with disabilities as full people, full human beings with all the good things and bad things. I think questions about finding relationships is linked up with questions about being accepted and about being valued.

Again, I think it’s beholden to all of us and particularly within an advocacy conference to think about what we do about those social issues, about the oppression that’s happened for people with disabilities over many, many years. And to use issues like sex and relationships to raise the humanity and the value and the worth of people with disabilities.

To say okay this is a social issue, it’s not an individual issue about whether you’re attractive to whether you’re fun or a good shag, it’s about a whole lot more than that.

DEAN DADSON:
Thanks Patsie. George do you have any comments from an advocacy perspective? Given that I think the Youth Disability Advocacy Service works broadly around a whole range of issues.

GEORGE TALEPOROS:
It’s hard because I agree with what Patsie said. There is a lot of discrimination out there around having relationships with someone with a disability.

I guess what I would say is you’re not alone, there is a lot of other people who are in your situation who would absolutely want the whole package. But it’s a lot of work. Tinder, try Tinder. Apparently you meet lots of people that way.

QUESTION:
I was explaining to someone yesterday who was coming today, she just wanted a
shag, her words, and I said oh, so there is Blendr and Tinder. Tinder would just probably get her a shag, job done. I didn’t go with Tinder, I went with Blendr, which if anyone doesn’t know is the straight version or the bi version of Grindr if people know what that is. Google it, look it up.

DEAN DADSON:
Can we explain that?

QUESTION:
Do I have to.

Alright in brief. Grindr is generally, what my gay male friends would be on and it helps them get hooked up for sex or whatever within a short radius of where they are at any time. Blendr is sort of the next step if your aren’t gay or you don’t care which way you go. And it’s online.

Yeah and Tinder because I looked at Blendr as a dating option and everybody else on there just seemed to look at it as an easy hook up option which I was like no. Tinder is just the hard core, lets shag and I haven’t been on Tinder.

GEORGE TALEPOROS:
This is about being clear about what you want. In the Blendr account you can say what you’re after. There is no point in putting something out there that’s not what you want. It’s all about marketing your product and see who wants to purchase it.

DEAN DADSON:
Martin question over here and then if we can go to Christine and then back to you.

QUESTION:
Hi. Love is a very real topic for us at the minute. We received an email from a producer of a show on TV wanting to talk about the topic of people with disability with sex workers. As we talk about it today there is more people with disability having sex with sex workers. If you receive that email how would you respond?

GEORGE TALEPOROS:
My view is the emphasis on sex workers is somewhat problematic because it assumes every person with a disability has to pay for a transaction. The reality is that’s not what all people want, some people want that that’s fine. We need to be very, very careful when we provide access to sex workers as an advocacy goal that we’re not saying that’s an answer for the relationship and the sexual expression of people with disability.

God there has been so many TV shows that do this. If there is one more show that looks at a sex worker and a person with a disability I think I will throw something at the TV.

DEAN DADSON:
Thanks George, we have a question from Christine and then if we can go to the back.

QUESTION:
Thank you Dean. My name is Christine Williams. I’m 64. I believe my sexuality is intertwined with my spirituality. Up until the dear lady over there said we want it all, which we all have the right to as far as I’m concerned, I was finding the debate quite clinical, looking at methodology, looking at policy. I really would like to see sex discussed in a much broader way.

I have no problem with a one nightstand if that’s what someone is after be it paid or unpaid. But I think sex can also be absolutely beautiful within that context of a meaningful relationship. I would be interested in what the panel feel or is it just the case of I’m getting old?

PATSIE FRAWLEY:
I think that’s a fair reflection. I think often when we talk about sex and relationships in disability we go to the clinical or the access or the policy. The way we’ve addressed that in the work we do is as I said is to use whole life stories, which are about the people and the relationships and sexuality within their lives.

Having said that for the work that I do as a researcher with people with an intellectual disability often the issues we’re addressing is the lack of opportunity people have had to have sex but also to have relationships.

Very often we just pointed straight there because that’s the issue that’s the hot topic and around that comes those other questions around acceptance, self-determination and love and relationships and community and all those things.

I agree with you and I think it’s really a bit about the time and resources unfortunately you have to deal with stuff too. People want to say that’s all very well but how can I start to talk about sex in my life and that’s often where we have to start.

QUESTION:
Could I perhaps suggest that for a future conference we might be able to hear some stories. I’m sure Christian is a very sensual man, he knows that because I have told him often enough. I would imagine George isn’t a virgin. I would be quite interested in hearing their stories of what has been a deep and meaningful sexual encounter for them. Perhaps the conference organisers might think of something like that for the future.

DEAN DADSON:
Christian had a comment.

(laughter)

CHRISTIAN ASTOURIAN:
I would control myself but really what I would like to say I think the more people with disability are involved in community life the more opportunity for sex and relationships will come. This is really how I see it.

The lack of opportunity, lack of time because we don’t have enough opportunity to be involved in the community for whichever reason. I think when we do have the opportunity to live a full life that will create also opportunity for sex and relationships.

One thing I have said, when dealing with people who don’t have disability, at the beginning they are very uncomfortable when you talk to them about sex, about relationships. I think you have to go beyond the physical appearance that for example I have. They come from a completely different mood really.

DEAN DADSON:
We have another question here and then back to Andrew.

QUESTION:
I’m from Tasmania and I’m interested in what kind of support is on this side of the water for people who want to go the next step over and have mild intellectual disability and are in a relationship and they want to have a family.

I myself am married to a gentleman on the spectrum and we have a 17-month-old daughter. I know many years ago I got a passing comment from a not so lovely person, saying oh you probably wouldn’t be able to handle a family.

My mother in law said yeah you probably would but probably only be able to manage one child. We want to have more children, why should we be restricted to only one child. I know from experience being at the hospital having our daughter we got a lot more support and they may have thought we were a bit stupid and naive, they wanted to make sure before we went home we were able to care for this child, which was all well and good. But in some ways they were very condescending and wrapped us up in cotton wool.

The morning before we were to be released it was well you can do it all, we’re not going to support you anymore. I know other people looking at having a family through other resources because once again when they were younger it was sort of put into their mind that sex is a bad thing, do not go there. So they need other ways to start a family.

When dealing with medical people it was sort of suggested to them oh so will you have the support when you take the baby home and expected that they wouldn’t. This child is going to be at high risk. Personally me and my husband we have experienced that also with trying to gain support in our local area. They thought we were a bit silly that we didn’t know what we were doing and that our child was labelled high risk.

I know that other people that have had children taken off them from the word go. I often think will we face that when our child reaches school age, we will cope. There needs to be a lot more support out there for those of us who can and want to have a family.

(applause)

DEAN DADSON:
Thank you. George?

GEORGE TALEPOROS:
Yeah thanks for sharing that story. I would like to just draw attention to Janette Lee who is at the back. Janette is an advocate at Yooralla. She has done a lot of work of supporting parents with disability. This conference is about advocacy.

I know a lot of good work has gone into supporting parents with disability to use their ISP’s, is that right Janette? Before the policy was you couldn’t use your ISP on anyone but yourself. Now the policy has changed. Part of your role is a parent and to fulfil that role you might need support.

Yes there has been some good advocacy. We have to keep doing it. You might want to catch up with Janette in the break.

DEAN DADSON:
Does anybody else on the panel have comments?

GLYNN EVANS:
Are you registered with Department of Human Services in Tassie?

QUESTION:
I don’t think we are because my husband and I are sort of forgotten, we’re in the forgotten part where we’ve never had much caseworkers or support or anything like that. We sort of fell under the radar and then as soon as the baby comes into the picture and it’s very sad that you have to have a child to get noticed.

I know that others out there like for instance I have a family member who has just become a parent for the first time and both her and her husband have intellectual disability, very mild but they’re there. I don’t know what support she will get. But you’re faced with parents that are a bit over bearing and think you don’t know how to look after a child so they do everything for you a lot like other people with disabilities.

Family members might think you don’t want to have a life so we will keep you at home and you will live with us forever and when we move on to the next life what will happen then? They’ve got no skills to get out there and be independent and live to full potential.

GLYNN EVANS:
Okay there is an organisation out there called Parenting Research. I can’t give you the details, I don’t know if anyone here would have contact details. It is Victorian.

GEORGE TALEPOROS:
Healthy Start.

GLYN EVANS:
Yes Health Start Parenting Research. They have lots of excellent resources. We use their resources, they’re available to general members of the community. That may be an option for you. It’s online, you can go online.

QUESTION:
And looking at connecting with the Powerful Parenting Team and maybe starting a Facebook page and connecting that way. It’s something we will be exploring further.

DEAN DADSON:
That’s fantastic. Can I suggest maybe having a chat to Janette in the break, Janette is involved in an advocacy group. That might be something that might be of some help as well. If we could go to Andrew and then to Anna.

QUESTION:
Hi, my name is Andrew. I had a few bad experiences but because I was assulted and the people who was involved with me were men and I did not enjoy it. I tried to get counselling, but there was none when I was assaulted. I fell in a hole and I took time out.

When I moved to Victoria, I didn’t know there were any programs about sex or anything. When I joined, the SARU advocacy I learn about those programs and I decided to join that program. They helped me a lot since I went to Victoria.

DEAN DADSON:
Thank you Andrew, Anna you had a question.

QUESTION:
My name is Anna Bogle and I come all the way from Cobram.

About 5 years ago there was a segment on TV about young girls who when they fell pregnant they didn’t have the option as to what they should do. One girl she was only about maybe 16 at the time, and the boy she was going with decided he didn’t want to take the responsibility of having a family. What she had to do in the end was give the baby up.

This in itself resulted in a very sad way, she never saw the baby again. I don’t know what’s right in this situation. If you don’t have any help or you do find yourself in that situation that you’re pregnant who do you turn to?

When I saw that segment on TV I couldn’t really believe it, what was she supposed to do? No job, too young, a man who didn’t really want her so where was she to go?

DEAN DADSON:
Do we have some comments about that?

PATSIE FRAWLEY:
I have one comment and it’s kind of general. There is a saying that says it takes a village to raise a child. I think you’ve got to find that ability I suppose. I think for many people with an intellectual disability and Naomi thank you for sharing your story, it highlights what I was speaking about earlier.

People with a disability are somehow seen different when it comes to questions of relationships and parenting. I think we have to move towards the centre that says they’re just like any other parents who will need help, who will need support, who will need resources.

It’s what Sharon raised earlier it’s about working with mainstream services so they understand how they give that support without making people feel over protected or cut lose. I think there is that work to do with the mainstream services and acknowledge if it does take a village to find the village and not expect people to do it on their own.

DEAN DADSON:
Thanks Patsie. We probably have time for one more question it’s sitting on 3 o’clock over here.

QUESTION:
Dean I need to warn about what you said. disability services, because say for instance somebody you know is pregnant they should be told to get help for their clients. Because if they don’t help the clients and they, you jump up and down they think you’re a troublemaker.

They need the training and they’ve got to be told to take the training and the all the staff or the managers too because a lot of the managers they work in the disability buildings know nothing about disability. They only know enough to help to know bits. They get no support like you said but we have to make sure the managers get the training. You’ve got to demand that they do the training because if they don’t do the training there might be inexperienced person but still come to they don’t know how to take care, respond to the people with a disability.

DEAN DADSON:
Thank you for that. We can take one more question or comment, then I think we have to break.

QUESTION:
Christian the most sensual thing about you are those purple suede shoes but I don’t think they makes me a shoe fetishist necessarily. Gorva Dahl a famous American writer said that sex is highly over rated. He lived with a man for 50 years and reckons he didn’t shag him but I reckon he was a lying old bugger. Indeed, he was a bugger.

DEAN DADSON:
Amanda I think we can fit you in, one last one then we will thank the panel and then the audience.

QUESTION:
I’m not normally lost for words but this is like something I’ve never…..I’m just having a hard time dealing with this. It’s opened my eyes and I’ve got a lot of mixed feeling in this area. I have been low (respondent crying) I can’t cope with what I’m going through I need to talk to somebody.

DEAN DADSON:
Thanks Amanda, I’m sorry that this has caused a bit of distress for you. I would just really like to thank everybody for their participation today. Thank you to you for some wonderful comments and some insightful questions. I would also like to thank the panel for their insights and their answers to questions.

I’m sure there is a lot lot more discussion to happen around sexuality, around relationships, around dignity of risk, around training, around a broad, broad area. Once again thank you for coming along.