GROWING BOLD AND CHANGING ATTITUDES

• View Love on the Spectrum on iView
• Read “At last, a dating show that’s actually real” – an article by the Sydney Morning Herald about Love on the Spectrum
• Read the Disability Discrimination Act 1992

Growing Bold and Changing Attitudes

Welcome to the Grow Bold with Disability podcast, brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most. To help us live bolder, healthier, better connected lives. I’m journalist, Pete Timbs. And I’m Tristram Peters. I work for Disability Service Directory, Clickability and am a wheelchair user living with spinal muscular atrophy.

Today’s episode of Grow Bold with Disability is Growing Bold and Changing Attitudes. And our guest is Jodi Rogers, a sexologist, a counsellor and a special ed teacher. Jodi is also now a reality TV star after appearing on the amazing ABC show ‘Love on the Spectrum’ in her capacity as relationship expert. In this episode, we’ll hear about the struggles that people with disabilities face when it comes to sexuality, education and stereotypes, and how Jodi is trying to help break down these barriers.

Jodi welcome to Grow Bold with Disability. Thanks for having me.

So, Jodi, you’ve worked across education, disability and sexuality for the past 25 years. What do you think is the most common issue that you’ve seen within the disability sector? Tristram that’s a really broad question to start with. I’ve gone for the difficult question to start with my apologies. Yeah, you definitely have.

Well, to start with it, breaking down a lot of attitudes and values that come with people that surround people with a disability, so that could include families, carers, support staff, the wider community. I think there’s been a long-held belief about people with a disability that either they are not sexual, or asexual or on the other end of the spectrum. There is a belief system that some people are over sexed. So you know, it’s really breaking down attitudes and values.

More recently, what I’ve found is needing to challenge people in terms of the convention of rights for people with a disability and that we’ve ratified that people with the disability have a basic human right to be sexual people, just along with the rest of us. Or to be in relationships and to receive really high-quality sexuality education. But what people sometimes do, they may say that they believe in those rights, but then their attitudes or values or actions actually go against those rights of people with a disability.

So what sort of actions are you coming across mostly with these people? I’m particularly talking about people with a disability that may require support from other services. I’m not talking about people that live an independent life and are able to self-advocate and make decisions on their own. Often, what you’ll find is that people with a disability, their relationships or their contact with other people or their right for being able to be in a sexual relationship with somebody, or even to just explore their own sexuality. To tell you the truth it may be hindered by policy and procedure, sometimes within services. Just the way that things are set up means that people may not be able to develop a relationship in a really natural manner with one another. That’s probably a broader spectrum in terms of the way attitudes and values come out. People still have a lot of attitudes about people with intellectual disability particularly, about whether if we give somebody with an intellectual disability an education about sexuality, whether that will make them vulnerable, where as we know the complete opposite is actually true, and has been true for a lifetime. The education actually supports people to have less vulnerability.

So in the past I’m assuming it essentially just wasn’t spoken about. How did they deal with it? Where did they go to learn about it? Was it just not discussed? Well, I mean, you were talking about me working with people with a disability for 25 years. There’s never been a point my life where I haven’t worked with people with a disability. And you know, you don’t know how you end up in your jobs, but I have a very, very clear memory that I was in, it was 1992 and I know it sounds terrible because that tells you how old I am, but in 1992, I was working in a segregated special school, and it was the year that they actually came out with the rights of people with a disability in ‘92. And one of those rights was the right for the education. For people with a disability to have the same education as everybody else prior to that in segregated settings. So in special schools, we didn’t really follow a curriculum that was along with everybody else. And that curriculum came in in ‘92. And I remember very, very clearly the principal of the school saying, Jodi, you’re gonna be doing Health Education and health education included sexuality education. And at that point there was really very little, very little discussion about it.

There was a great deal of conversation about what should be included or not included. Everything was about protective behaviours at that point in time and I’ve seen it continue. It was only about protective behaviours to protect a person with a disability from being vulnerable to sexual assault. But it never explored a person’s basic right for pleasure or intimacy or being able to develop relationships. So you’re right at certain points it was never, ever, ever discussed in any shape or form. But the world has changed dramatically, and I think now that it’s seen as being something that’s integral not just for people with a disability, but everybody in general to receive really high quality, comprehensive sexuality education.

So, Jodi, back in 1992 and leading up to that what changed in the world? Why did those attitudes change and give people with a disability the rights they deserved? People with a disability changed it. People with a disability, once those rights were given to them we’ve been able to listen more to these people with a disability. Anyone who is, you know, on the autism spectrum that’s high functioning or people with a physical disability, people with an intellectual disability that have found a voice and have been able to express themselves and express their needs and wants.

It’s people with disability themselves that have changed the attitude in value and really, really challenged services. You know, when I originally started in disability services, they were really just charities that were set up to help the poor person with the disability and the world has completely shifted in that space and time. And as people have advocated for themselves and services surrounding people have really listened to what those people require and want, you know, it has really shifted that people with a disability themselves are able to speak out for what their needs are, and the rest of the community has to follow along with that and rightly so, you know.

I suppose it is the old saying of nothing for us without us type of thing. And it used to be much more patriarchal that services would tell a people with a disability what they required, and that’s now turned completely on its head. And now it’s people with a disability telling others what they require. Yeah, we’re a stubborn lot sometimes us people with disabilities. I can vouch for that. I love the notion of making the change themselves and ourselves.

What sort of barriers did society put up? I’m assuming that the message wasn’t always heard loud and clear. That there were barriers that stopped it from the change taking place. Yeah, well, you know, Tristram you’d be the same as me that the concept of disability is so vast, and so when you’re talking about people that might have a physical disability, it’s very different than somebody that might have a severe or profound intellectual disability.

And I think that attitudes about sexuality have been quite different, depending on the top of disability that people have, but in general in my world, I’ve found that the biggest barriers have been that for some reason the concept of sexuality, not just for people with a disability, the concept of sexuality for people to be a sexual being has really been designated to the beautiful or what the media concept of beautiful is.

And so I think, what a lot of the barriers have been is that we had never seen or had role models of people with a disability within our mainstream media to start with. And so that’s shifted. But I think the other shift in it is that people at one point of time thought, well, if you can’t walk, obviously you’re not sexual. Or if you can’t, you know, tie your shoe laces without support your not sexual. It seemed that sexuality was so far down on the list of what people thought it was to be, not human, I know that’s the wrong word to use, but, you know, I think what it was about was people prioritised. Other people prioritised the person with the disability’s needs or wants and so they prioritised things as in access. I’m not saying access to sort of other areas, but it was really the point of view of another person about sexuality that was very, very low on what they considered to be a person with a disability’s needs. Which is completely ridiculous.

Jodi you did mention some of the main stereotypes that you came across especially back in the day that people with disabilities are asexual or oversexed. What are the actual truths? Because I must admit, growing up and I’m not far off 50. I heard growing up, that people with Down Syndrome were oversexed and people with autism didn’t even like to be touched. But what are the actual truths?

The truth is that sexuality is incredibly diverse for the whole population, for every single person on the planet. The way they express themselves, what they desire, what their fantasies are, what their needs for sensuality are, their intimacy, every single person is different. So why would we categorize people with a disability in any other different fashion? It astounds me that because we talk about disability, then we almost say, well, this category of people must be like this or this category of people must be like that. You know, I think we had a lot of myths that need to be busted.

People with Down Syndrome were considered as Children to be really, really cute and lovable, and lots of hugs were given. But when a person with Down Syndrome might have become a13 or 14-year-old boy, that hugging became something that was sexualised. They may have never, ever been taught who do we hug, how do we hug? And hugging is not sexual. It’s about connection. There was a deep belief that people with autism spectrum disorder didn’t like being touched or they didn’t like intimacy or there was no desire or that they were asexual. You know, the population of people with autism is just as diverse in their sexuality as autism is diverse.

So, you know, I think that we categorize people very, very quickly. Um, we do it about everybody’s sexuality. And in terms of busting those myths. Mainstream coverage is so important.

Do shows like Love on the Spectrum help? Do they break down those stereotypes? Look Love on the Spectrum was really fantastic to be a part of, and a lot of that was really about relationships. It wasn’t really talking about people’s sexuality, as much as their sexual needs. But it did touch on components of that. I think that as a mainstream community that we do have ideas or perceptions, and the only way that they can be broken down is by people with a disability or, in that particular case, autistic people speaking for themselves and telling everybody what it’s like.

You know, it’s a really hard one because you also don’t want disability to be so distinct that there’s continual people with a disability, or these types of disability need to speak out on mainstream. But it’s actually the only way that we can teach people that have never had contact with somebody with Autism. Or people that have never had contact with somebody who is hearing impaired or deaf. We need to teach, we need to change and bust people’s ideas about what it is to have a disability.

So it’s a great starting point. I suppose the end goal, wouldn’t it be great to see a powerchair user on the bachelor or something, you know, taking it to that next level. 100%. You know, that’s probably what I was getting back to before. Even within mainstream media, we have a concept continually about the body type of somebody or what somebody needs to look like to be a sexual kind of being or somebody who is attractive. And I think that we need to break that completely open. But that’s not the majority off us. That’s not the majority of people who have a disability or don’t have a disability.

The majority of us don’t fit what we are being told is sexually attractive. I just think that it’s setting a lot of us up for feeling like we are failing.

Is there a fear in these shows like Love on the Spectrum or even as Tristram was saying, getting a wheelchair user onto one of these bachelors shows? Is there an issue in this politically correct world that it becomes inspiration porn if you know what I mean?

I think that’s the difficulty. Everybody has their own perspective and point of view. And all I can say is that I always listen to the person that I am with. So in some regard, I work with people who are on the autism spectrum. And so they come to a counselling situation with their own perspective and point of view, just like everybody does. And so for some people, they are saying, well, isn’t this just inspo porn? Or it’s ableism and to create a show just about people with a disability may not be that the right thing, or the correct way of going about it in their perspective and point of view. For other people, however, it’s the only way that we can get the message to the vast majority of the community that have never had contact with somebody with autism.

Some still believe that someone with autism may not even give them eye contact. I think we’ve got to follow the lead of the person that we are with, the same as every single person I hang out with every day. I treat it the same as I would work with somebody who selects their own pronouns if they transgendered or they have gender fluidity. I don’t choose what pronouns they use. They tell me what pronouns they would like to use, and I think it’s the same within the perspective of any person with a disability. You need to talk with that person from their perspective and point of view. So if somebody with a disability chooses to call themselves a disabled person, so do you. If they call themselves a person with a disability, so do you. If they have a perspective that what is being shown through the mainstream media is very ableist then I think we have to hear that. And we have to listen to that. Just the same as we have to sort of challenge a belief system of the mainstream about their perspective of people with a disability. I don’t think that answered any of your questions.

No it did. It definitely did. Definitely. It’s very diverse. It’s so diverse. If every person I did counselling with on a daily basis, if I came from my perspective and point of view, then how am I really supporting somebody? You have to listen to other people. You have to really take on board what their needs and wants are and what their perspective and opinion is and not what mine is.

So, Jodi, what else needs to be done? I mean Love on the Spectrum was a fantastic and incredible show and really opened my eyes up to people and their families, especially living with autism and their patients and every single person in that show is completely different. But what else needs to be done to change attitudes not just towards autism, but just everyone in the disability sector?

Are you talking specifically about sexuality in terms of that area. Well but it’s more about the change of the attitudes towards people. Do we need to see, as Tristram suggested, maybe people who use wheelchairs on these shows like the Bachelor, more inclusiveness, not just within their own show, which you kind of touched on, or do we need to see them more in parliament? Do we need to see more of their sports on television? How do we change people’s attitudes? Every single way you just mentioned. Every single way. And I think that if we’re talking about any group of people who are a minority, we talk about this across the board with all minority groups, you know, we need to see people of diverse race.

We need to see people of diverse religion. We need to see people with a whole range of different disabilities. We need diversity within our community. See people with different sexual orientations and gender. We need all of that to be within all realms of our society so that the minorities actually cease to exist. And we just say it as people, it’s the same for people with a disability.

I think we’ve got a long way to go for that to happen. You know I hope within my lifetime I see that happened. But it’s slow. I think that the barriers are slowly breaking down. It’s taking a long time, but I think , as I said, I’m really hopeful, and the greatest hope I have and the greatest belief I have is that it’s people with a disability speaking for themselves and other people listening and if we can actually just listen to what people with a disability are asking from us as a community then that’s probably the answer. You gotta nominate me for our Bachelor Pete. That’s the answer. Oh, I thought you were gonna say for Prime Minister.

Jodi, we like to wrap up each episode with the question. What does living a bold life mean to you? You could have asked me that at the beginning, I think it’s being brave enough to have a voice, and I think in terms of my life as in my life as Jodi, my bold life is to call people out. And my bold life is to be brave enough that when somebody makes a comment that’s derogatory about somebody with a disability or a comment that is homophobic or racist or sexist it’s being brave enough to actually call them on that and to challenge people’s belief systems. For me being bold is being brave enough to speak up.

Beautiful, beautiful, fantastic. Well Jodi thanks so much for joining us today on Grow Bold with Disability brought to you by Feros Care.

Thank you for listening. And if you have enjoyed today’s episode then make sure you subscribe to the podcast, Grow Bold with Disability. And if you like what you heard, please take a few moments to pop over iTunes and give this podcast a quick rating so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it growing bold and for over 25 years Feros has been making it real for both older Australians and those living with disability. To find out more visit www.feroscare.com.au

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.