That radio programme was fantastic especially with the number of people who rang at that time of the night (3a.m.) - some disabled people, a sex worker, politician, parent of a disabled person.
There were quite a few dilemmas discussed. Among them:
1. What level of disability?
The person with the disability may not be able to express their needs - and it could be a minefield - is the person capable of expressing their wishes, and could it end up with an accusation of rape especially.
2. How do disabled people summon the courage to tell their parents?
It's hardly as if you can say; "Mum, Dad, I'm 42 and need a root. Help me out here."
3. If able-bodied people find visiting sex workers daunting, how much harder must it be for a person with a disability accompanied by a carer, parent or someone else? What if the sex worker needs the carer in the room with the patient to translate things?
4. Money. Who can afford it? People with disabilities tend to earn less, if they've a job in the first place. They need permission from their welfare agency to spend their allowances and I don't see any government agency giving their consent. And will the allowance cover the expense?
5. Many homes for people with disabilities are run by organizations of religious/social welfare origins ranging from the Mormons to the Salvation Army. They may have issues about endorsing something for fear of backlash from their own followers.
6. Touch is so important. One mother rang the programme saying that until it was mentioned, she never touched her son in an affectionate way. It was always with the approach of a carer - changing his clothes, wiping his bum, swopping the catheter bag etc. The actual tiring duties of being a carer had over ridden everything else.
I wish the ABC radio had a link to that discussion. I'm sure it'd be an eye/ear opener for everyone.
Nearest I could find was this link to a radio programme done in 2009
http://www.abc.net.au/radionational/programs/360/the-too-hard-basket/3093916
I've reproduced it here but do look up the link to see the photographs!
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ABC Radio National
360documentaries
The too hard basket
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Saturday 12 December 2009 2:05PM
Disabled people are rarely touched in a loving way or thought of as sexually desirable yet they have the same need for a sexual life as everyone else. In this confronting program John Blades, who has a major disability himself, talks to sex workers about why they work with disabled clients and the importance of touch to every human being.
He also meets other people with disabilities; Gary who has burns to 60% of his body and finds that being touched by his wife on his burnt skin makes him feel desirable; and Caitlin, who has cerebral palsy, and whose first sexual experience was with a sex worker.
This program won The Walkley Award for Social Equity Journalism, The Human Rights Award and Best Documentary from the Asian Broadcasting Union.
Warning: There is material of an adult nature in the program
Extra audio
Dr Gary Fulcher - re-connecting with his wife sexually after an accident that left him severely burnt and his work as a psychologist in the area of disability and sexuality.
Saul - discusses the work of Touching Base, an organisation that supports sex workers who have clients with disabilities and his own experiences of working with these clients.
Kylie - is a sex worker who talks about her work with people who have disabilities and the importance of touch and sexual expression in our lives.
Caitlin - is a young woman with a disability who talks about her own sexuality.
Supporting Information
John Blades: Hi Kylie.
Kylie: Hey, how you going? Nice to see you.
John Blades: Good. How are you?
Kylie: Good. Bit cold.
John Blades: Nice to see you. I've been tingling all over...
Kylie: Unreal. That's good to hear.
John Blades: Thinking about seeing you and your magic touch. I feel good.
Kylie: Yeah good... hopefully better soon.
John Blades: I feel warm, but about to get a lot warmer.
Kylie: I hope so! [Giggling]
[Music]
John Blades: I'm 49 years of age and I've been in a wheelchair for 16 years and a motorised wheelchair for 11 years. I've driven the wheelchair with my chin for seven years. 1982 was the biggest year of my life, when five major things happened: I graduated from civil engineering at Sydney University; I began working as a structural engineer—I worked for 16 years in the design of buildings and bridges; I started working in radio, on the community Sydney radio station 2MBS-FM—I currently co-present Background Noise on 2MBS-FM once a fortnight.
[Excerpt from phone discussion between John Blades and Doug Anderson:
John Blades [talking on the phone]: Hi Doug, it's John Blades.
Doug Anderson: G'day John Blades, g'day.
John Blades: Doug Anderson. So this is for your very kind write-ups about Background Noise in the Sydney Morning Herald.
Doug Anderson: OK, let's go.
John Blades: OK. Background Noise interview and feature on the Australian, Melbourne-based, multidisciplinary...]
[Excerpt from radio program:
Richard Fielding: Good morning, you're tuned to Background Noise on 2MBS-FM, 102.5 Mhz.
John Blades: Good morning, Richard Fielding and myself, John Blades, return for another morning of sound adventures.]
John Blades: Richard and I co-founded an experimental music group called 'The Loop Orchestra,' also in 1982, which has been described as 'Australia's most enduring experimental music group.' We've done over 40 live performances, had CDs released—of our own and compilations—in Australia and Europe, and at the end of last year, [a] collaborative compilation released on a label in Beijing.
And 1982 was really a very big year for another reason in that I was diagnosed with multiple sclerosis. This is a shock to everybody who's diagnosed with the condition; probably less so for me, because I'd lived with my mother who'd had MS, for 25 years, so I'd learnt to live with it and I'd seen the way it developed in her. Hers was only of a very mild... never needed walking sticks or a wheelchair or anything.
Connie (home care worker): Now we're placing the sling above this slide sheet for John so that we can place him into the commode chair for the shower, ready for the shower.
John Blades: The Home Care Service of NSW services me with all my personal care needs. Part of this is that each morning two workers like Tommy and Connie get me out of bed, shower me, change me, transfer me to my wheelchair and feed me breakfast. Home care provides me with independence to live at home and pursue my many and varied activities.
My attitude towards MS has always been to put the MS on the backburner and get on with my life. I guess the more it progressed, the stronger became my determination to live life to the fullest.
John Blades [addressing Kylie]: Kylie, as a way of introduction, would you please talk about the really very important work you do with people with disabilities?
Kylie: Well, I've been a sex worker for about 15 years now and over time I started seeing more and more clients who presented with a disability. So it's just kind of evolved over the years and I really enjoy seeing all my clients, including clients with disability. I offer a range of services to all my clients and my main aim is to be able to put a smile on their face.
The skin is the largest organ in the body, and people ignore that. And I think that everyone deserves the right to be touched and to be caressed and to feel good about themselves. The important thing with my clients is that I don't necessarily ask what their disability is, but what their mobility issues or range is and how I can best accommodate their needs during our session together.
John Blades: Speaking personally, when you first came to me, for instance, you asked very sensitively if there was anything you should know about me, such as areas of pain, or spasming. And every disability has a different set of constraints and requirements.
Kylie: Mm-hm. Oh definitely.
[Discussion between John Blades and Gary Fulcher:
Gary Fulcher: G'day John.
John Blades: Good afternoon, Gary.
Gary Fulcher: How are you?
John Blades: Good.
Gary Fulcher: That's good.
John Blades: I'm in for another session.]
John Blades: Dr Gary Fulcher is a clinical psychologist with the Multiple Sclerosis Society NSW and Victoria. Thank you Gary for agreeing to speak to me.
Gary Fulcher : It's a real pleasure, John.
John Blades: Gary, would you please talk about your road—in more ways than one—to becoming disabled, and the nature of your disability?
Gary Fulcher: I have a number of disabilities. I guess the mildest one is that I have insulin-dependent diabetes and in 1996 I was driving from one work site to another, had a hypoglycaemic—or low blood sugar—episode, pulled over to the side of the road to get jelly beans out of the glove box, but passed out into what's called a diabetic coma before I actually got to the jelly beans.
Through various circumstance, a fire started under the car—the engine was still running—got sucked into the cabin of the car, and then once inside it just took off with some fury. And, um, I woke up out of my diabetic coma on fire. I spent six months in Concord Hospital burns unit, had multiple skin graft surgeries 'cos I was... had third degree burns to about 60 per cent of my body and lost all of my fingers on both hands. On my right hand I have a very small remains of my thumb and my index finger, my first finger, so I can grip with that and that allows me to be able to pretty much live independently.
[Discussion between Gary Fulcher and his wife:
Gary Fulcher's wife: So shall we do chips, anyway?
Gary Fulcher: Yeah, my word.
Gary Fulcher's wife: Oh, I'll give that a clean.
Gary Fulcher: Yep.
Gary Fulcher's wife: Is this clean?]
Gary Fulcher: One of my biggest losses is my ability to be able to hold my wife's face and to be able to have the sensation of feeling her face. And in fact all the grafted skin on my body covers areas which were burnt down to the bed, like all the skin was burnt away, so that there are no nerve-endings there. So touch for me is now very different, but I also have areas of the body where I don't have burnt skin where touch is quite usual. And on the non-burnt skin, being touched, being caressed, being massaged, being held, is very important—because of just the nice sensation. But touch on the grafted areas, on those not particularly attractive areas, is also very important because it actually says, 'You're still OK, I still love you, I'm still connected to you, even though this isn't the way you should be,' I guess.
Saul: Touch affects us, I think, it can affect us right throughout the core of our being. You know, when you open yourself up to feeling someone else pleasuring you, it's a very vulnerable moment. I think that the work we do touches upon lots of vulnerabilities that people hold, um, vulnerabilities around their sexuality, their ability to relate with others.
John Blades: Saul, thank you for agreeing to speak to me. And as a way of introduction, would you please talk about the very important work you do with people with disabilities?
Saul: Thanks, John. I came into doing sex work from a massage background, so I already had a really good understanding of the therapeutic benefits of touch, you know, from the work I'd done with massage clients. Um, and I've certainly brought that into my work in the sex industry. So I come from a nurturing place, a place where people come to receive touch for pleasure, which bolsters not just their physical system through the benefits that you get from massage, but also psychologically, you know, the sense of closeness to another person, to sharing your sensual interests and desires, and to play. It is an intimacy that I think really strengthens people's self-esteem, which can often be negatively affected [in] people with disability. You know, the chance to interact with someone who's not judging you I think brings its own benefits.
Gary Fulcher: Prior to my being burned, I had a very healthy sex life. After being burned, I was almost frightened by the whole prospect of sexuality, mainly because I thought of myself as being so repulsive, I guess. And it was my wife who initiated our first sexual encounter, and she often talks about that as 'managing our first sexual encounter,' and I think that's very accurate. She was very aware of how sensitive and embarrassed and kind of lacking self-confidence that I was. And that was an enormous breakthrough because we actually had sex; it was just such a fantastic breakthrough and reconnection at an intimate level.
[Music]
John Blades: In my case, the MS hasn't damaged the nerves on my skin, sensation is normal. If you prick my fingers or feet with a pin, I can feel it for sure.
Kylie: The holding hands and the slow touch is just as important as intercourse, and for a lot of people the actual penetrative sex is such a small element of what we provide. And for some people, it's got nothing to do with it. I have some clients where they can't feel from below the nipples, so they may get erect, but they can't feel anything. They like to watch and they're incredibly sensitive from the nipples up. And so you can have two hours where you are touching someone and rubbing your smooth skin up against theirs, or using my long hair and just gently tickling them, and it's slow and it's sensual and it's got nothing to do with penetrative sex, but it's some of the most sexy, erotic experiences that you can have.
Saul: And it makes it a much more pleasant journey I think when you're not striving or waiting just to have an orgasm. I think that can be very distracting from the journey of pleasure of interacting with someone else.
[Music]
John Blades: My close friends, like Duke and Justine, provide me with great support in my life.
[Atmosphere in food service area:
Justine: And would you like some beans? That's a scallop.
Duke: Like to try one of these?
John Blades: I'm going to go. I want to go and see the current exhibition of Callan Park outsider art gallery.
Justine: Oh yeah?
John Blades: French outsider artist called Gérard Sendrey.]
John Blades: I've always had a very rich cultural life, embracing live experimental music, film, and art exhibitions. The most meaningful art for me is outsider art, done by untrained people with very raw visions. The work is intuitive, completely free, and spiritual. It's been very important to me throughout my MS journey to never regard myself as sick. The word sick is a straightjacket.
[Discussion between John Blades and carers:
Connie: You forgot to blow your nose today. I can't believe it! [Laughs] Do you still need to blow it?
John Blades: I do.
Tommy: [Joking] No, we're out of time. Sorry, John.
John Blades: Out of time, no time for a nose blow? [Blows]]
John Blades: Getting someone to blow your nose for you—it seems like a small thing, but it's actually symbolic of what you're giving up, the independence that you're losing. I'd love to be able to brush my own teeth and blow my own nose, but I have these lovely carers that do it for me! [They all laugh] It's a real bonding experience.
Eight years ago I was suffering what 70 per cent of people with MS suffer, which is depression, I'd fallen into a hole of depression. 'Cos I was really at the point where I wondered what could possibly happen next with the body—with the legs, the arms going, knew people who'd lost their speech, their swallowing, their eyesight, their neck movements. I thought, 'My gosh, if any of this happens to me, it would really be the end,' and I didn't want any of that to happen. So I spent time actually during the day, a number of days, I don't know how many weeks this went on for, but I would actually stare into space, think seriously about the ways of killing myself, of ending it all, 'cos it seemed the only way out. A wonderful neurologist I picked up at that time, who I'd known from years before, was the first one to be able to see that I was worried about my future and asked me if I'd ever thought about killing myself.
Gary Fulcher: In MS, the suicide rate amongst people with MS is eight to ten times greater than in the general population. And so I often work with people who are very depressed and sometimes suicidal. Interestingly, in the discussions with those people, almost invariably there is a discussion about sexuality, there is a discussion about loss of intimacy, not necessarily with their romantic partner but with other people—friends, family—the fact that people now don't touch them, or they touch them in different ways, and so forth. And this of course adds into that depression, that self-image, the sense of self-worth and value.
John Blades: Seven years ago, my discovery of voice-activated computer and the internet opened a whole world to me and helped pull me out of the hole of depression.
Tommy (carer): I'm just feeding John his meds, his medication and vitamins and stuff.
John Blades: In 2001, I read a book called Taking Control of Multiple Sclerosis, by Professor George Jelinek. This was a revelation for me and a clear way forward. In the book he showed that a low-fat diet and natural vitamins and supplements would arrest the progress of the MS. My MS immediately stopped progressing.
Tommy: Favourite—flaxseed oil. Tastes beautiful.
John Blades: It's what you call really taking control of multiple sclerosis. I've regained little bits of movement in my arms and fingers.
Peter: Hard as you can. Go, go, go, squeeze, squeeze, squeeze, squeeze, squeeze, squeeze, squeeze, squeeze ... and relax. Good one, John.
John Blades: Peter's job is my physiotherapist.
Peter: OK now let's see what you can do with your thumb, trying to just bend the thumb down. And relax. I've never seen that much movement of that thumb.
John Blades [to Peter]: It's incredible.
John Blades: About three years ago, with Kylie, we discovered together sexual reawakening when my erection and ejaculation returned after having been in the wilderness for 23 years.
[Sound effects: fireworks]
It's very rare for someone with MS who's lost sexual function for such a long time to regain it. It was such a huge relief to me; it felt like a great weight had been lifted, almost like a cloud had been lifted, and made me feel better about myself, improved my self-image, more relaxed with myself. The last three years, I've just felt like a different person. And I've felt normal again, completely normal again.
[Sound effects]
John Blades: My taxi driver, Ali, is really my road to independence, in more ways than one.
Ali: I put the strap around his chair first, remove the head supporter from the back of his chair, and then I put the bit in the side... supporting, he's not moving when I'm travelling with him. 'Cos I've done it for many years, I'm very fast. [Laughs]
[Sound effects: getting into the taxi]
Ali: I like my job, I love my people, to work with them, and people, I don't know, maybe they like me and they listen to me, what I say. [Laughs]
John Blades: People have a—I guess— a natural aversion, some people, to people with disabilities. Like, I know I've been out in public and I've needed a hand with something and I've called out, 'Excuse me!' Very often, people just ignore you.
Several years ago, I'd gone out to movies in the middle of the city of Sydney. And in my motorised wheelchair with a chin control, on my own—I often go to films on my own and I always feel quite pleased with myself when I go on my own to a film, and I feel like it's an achievement to be able to do all this with no movement below the neck. I had the wheelchair backed against the building on the main street, George Street, in Sydney, on a wide pavement, 6 o'clock at night, people absolutely everywhere, lots of people passing by, lots of attractive girls, which I noticed, but I noticed one particularly. I can still see her to this day—needless to say, I'm still looking for her—beautiful girl in a beautiful red dress, blonde girl, she was standing at the traffic lights, talking to somebody and I of course was looking quite fixedly at her. Don't know whether she saw me looking, but anyway, I saw her rummaging in her bag. I must have turned my head for a split second, 'cos I was looking at her a lot, almost hypnotised, and in that instant, she rushed over to me, left $3 on my tray, raced off across George Street, no word, no nothing, no chance for me even to explain, 'I'm all right! I'm not looking for money.' She'd gone. And I think I would have preferred one of two things: a kiss on the cheek, or if she'd offered to buy me a drink.
Saul: I've also worked with people with acquired brain injury, people who are amputees, people with hearing impairments, HIV-positive people, people with HIV-positive-related dementia, people with cerebral palsy, intellectual disability, Parkinson's disease, also worked with clients with significant scarring due to multiple operations and burns, and also clients who, during the course of our ongoing relationship, have had a stroke, and seeing the difference that's had on their sexual capacities as well.
[Phone conversation:
Kylie: Hello!
Bruce: Hello, Kylie!
Kylie: Yes.
Bruce: It's Bruce. Hello?
Kylie: I'm nearly at your place.
Bruce: You're nearly here?
Kylie: Yes, yeah, I'm literally at your front door.
Bruce: Oh right! You'll come round to the back, won't you?
Kylie: Yes, see you in a sec.
Bruce: See you soon. OK. Bye.
Kylie: Bye.]
Bruce: She's on her way!
John Blades: The person who's most important in my life is my wonderful brother, Bruce, whom I live with, is my principal carer, works five days a week, one of the army of unsung carer heroes.
[Discussion between Kylie and Bruce after she arrives:
Kylie: I tried calling before but it was ringing out, so...
Bruce: Yeah, you used the computer phone. Normally the hand phone you use, isn't it? Doesn't matter.
Kylie: Oh, yeah, I did the last one that got dialled... Sorry.
Bruce: That's all right!
Kylie: Go through?
Bruce: Come on through.]
Kylie: When I speak at different, say, either university or at a conference, sometimes I ask people and say, 'Well, in the last week, who here cuddled up to someone? Or who here had sex? Or who here masturbated?' And, you know, the brave people put up their hands. And I say, 'And who here in the next week will be doing any of those things, or you think you would like to?' And then I say to them, 'Well, imagine if you had to tell three other people, including, say, your mother, that you were going to do that and you needed their assistance to be able to do that.' And people are like, 'Oh, no way.' I'm like, 'Well, put yourself in other people's shoes, because that's what some people have to do.' And it's wonderful that the parents that I have met, through my interactions with my clients, have been fantastic, and they've had to bite the bullet and they know that their children—who are grown children now, they're grown adults—are having sexual interactions with me and sometimes in the other part of the house. They make a cup of tea, they leave us alone, and then it's all quite fine, and it's wonderful that they are able to do that, and I hope that the rest of society can catch up soon.
Caitlin: I know people who are quite fortunate, whose mums actually support them going to see sex workers and will sit in the waiting rooms of brothels, waiting for their son or daughter to finish an appointment.
[Music]
John Blades: Thank you Caitlin for agreeing to speak to me today.
Caitlin: Not a problem at all.
John Blades: Would you please talk about the nature of your disability and how long you've lived with it.
Caitlin: I've had my disability—cerebral palsy—all my life. Um, so it's just the way it is. I'm 31 years old and like everybody else, when I was a teenager I wanted to know... the issue of sexuality and body image came up for me like it does everybody else. I walk with crutches. My first sexual experience was actually with a sex worker, a male sex worker, 'cos I'm a straight female, but I wanted to know whether sex was possible for me, but I wanted someone good at it so I could gauge what was possible for me and whether or not I had to do things differently in order to achieve a full, you know, a full sexual life.
John Blades: I think really, and you'd probably agree, there must be many people with disabilities who are denied sexual expression due to lack of information and or opportunities.
Caitlin: I consider myself really fortunate to have the parents that I do, because I can tell you, when you go up to your dad and say, 'I want to see a sex worker to see if it works for me and whether it's possible'—because I had able-bodied siblings and relationships were possible for them—I was concerned about doing it. But it was a journey for them and it was a journey for me. And it was hard to find a male, straight sex worker, it took quite some time.
John Blades: Kylie, I'm going to return to something about the experience of clients with disabilities that you've seen when it's been their first experience of sexual freedom if you like.
Kylie: Mm, it's been a great honour to be able to sometimes be the first person that has ever been able to really touch someone, or caress someone, or hold someone in a way that doesn't involve washing or bathing or taking someone's temperature or undressing or dressing them. All those things are mechanical acts, where you're physically touching their body but it's not looking at the person as a whole. And my role to be there is to be able to see someone as a whole being and it's their time and it's about making them feel good. And there's a great process of finally they're getting to explore something, and a bit of sadness that it's taken so long for them to get there.
John Blades: People with disabilities have more difficulty in forming the so-called normal relationships. A friend of mine a number of years ago said to me, 'John, if you started a relationship with someone, they'd be taking on a lot.' I'll never forget those words. Since my disability became more visible, 20 years ago, I haven't had a relationship.
Caitlin: It's really funny, 'cos I can sit in a bar and people will talk to me, and when I'm sitting down people can't tell that I have a disability. And then when I go to the toilet—because I walk with crutches—they'll see the crutches and they'll either run in the opposite direction, or they'll think that they need to care for me. So it's this whole thing that you either get people that are really scared or apprehensive about being connected or attached to somebody who has a disability, or you get people who want to care and look after you. And I don't want to be seen as needy and people with disability don't want to be seen as needy.
It's really funny, because the person that I'm seeing at the moment, I met out in the pub and I said to him, 'I'm not needy and I'm not desperate, I just have a disability.' And he laughed at me and went, 'Why did you say that before I even opened my mouth and said hello?' And I said, 'Because people either think I'm really needy or really desperate because I have a disability, and I'm neither of those.' And we've been going out now for six months and it's going really, really well.
[Discussion between Gary Fulcher and his wife:
Gary Fulcher: Darl, can you do my buttons please?
Woman: Yeah, sure.
Gary Fulcher: What's in there?
Woman: [Laughs] Nope, there's nothing in there. Do you want me to undo these?
Gary Fulcher: Nah, they're fine.
Woman: OK.
Gary Fulcher: Thank you.]
John Blades: And I know you've made a great study of the role of carers, but carers sometimes are the sexual partner and what's your perspective on how much of a strain that can put on the sexual relationship?
Gary Fulcher: Yeah, that's a fantastic question, John, because society tends to think automatically that your intimate partner, your romantic partner will be your carer and I think that's very unfair, and I think it's socially irresponsible. As the needs of people with disabilities increase, the role of their partner—their sexual partner, their romantic partner—changes to a functional role. So rather than being a romantic, intimate role 100 per cent of the time, it starts to shift into romantic and intimate part of the time and functional caring another part of the time. And as that shift moves more and more towards the functional care, the carer needs actually to disconnect emotionally from the person that they're caring for, their intimate, romantic partner, and the intimate connection can die. For some reason, society seems to think that, if you're born disabled or you become disabled, all of a sudden all your sexual needs disappear.
John Blades: No sex life.
[Music]
Saul: My first client was in a wheelchair and when the booking was made, no-one had informed me that my client was a paraplegic. And when I arrived at the door, I was very surprised and I wasn't quite sure how to handle the situation. I think at that point, I don't know that I'd even had a conversation with someone who was in a wheelchair, because back in the early 1990s, there wasn't very good accessibility around so lots of people in wheelchairs you just really didn't see very often. But he was a great teacher for me and he taught me lots of things, like that he had a varied sexual appetite. It happened that his wife was overseas and his girlfriend was out of town and that's why he had hired me to come along. So, you know, it was quite an eye-opener to the diverse sexuality of people with disability, just with the first client.
John Blades: Saul, would you tell me about the voluntary organisation, 'Touching Base'?
Saul: 'Touching Base' began in late 2000. People with disability were wanting to get access to sex workers who weren't going to treat them with prejudicial attitudes and sex workers were looking for training. We have a referral list of sex workers who have done our training or who are experienced or willing to work with clients with disabilities. It's a very important part of our work, helping people to connect. There are also important occupational health and safety aspects, like how to work with condoms and catheters, if people have a catheter, or how to help a client fall safely. So there's a whole range of different aspects that we cover. It's timely, you know? I think that as society matures—and I think we are in a maturing society—it has the capacity to deal with things that were before in the too hard basket and hopefully that's what 'Touching Base' is doing, we're dealing with a lot of the issues that people have felt previously were too hard.
John Blades: And as a friend of mine said, 'Why should you be deprived of sexual experiences just because you're disabled?'
Kylie: Sex sells everything, but when you're actually selling sexual services or people are wanting sexual services, then suddenly it becomes the too hard basket. There are a couple of countries who have really recognised the rights and the supportive nature of the government towards people with disability. Every local council area in Denmark, except Copenhagen, are providing monetary assistance for people with disability once a month to go and see a sex worker.
[Music]
Saul: I remember one of my clients who I saw who had significant disabilities, including he couldn't speak—we used a form of sign language to communicate. It was also a really important opportunity for this client to explore their sexuality, because their only previous sexual encounter had been with a carer who had raped them, to the point where they had been hospitalised for the damage, then required surgery to recover from this abuse. So working with this client was a real opportunity to help someone to rewrite the past; this was their opportunity to explore what they wanted to explore, where they had the control. And that was really quite a magical session.
John Blades: Caitlin, do you know of any other disabled women who've used sex workers?
Caitlin: No, I don't personally, but I can imagine it's a really hard thing to do, particularly if you're a straight female, OK? And finding a female sex worker who would be willing to see a female as well would be difficult. Women are still afraid to pursue the idea and to look at it. They sort of press it down and think it's not really an issue, we're supposed to be nice and well behaved and polite and genteel. That's not an issue, we're not supposed to explore.
John Blades: And it also gives you a great feeling of being normal.
Caitlin: It does. Sex is one of the biggest equalisers.
I had a woman come up to me and go—you know, in the street—and she asked me what my disability was. And I don't often talk about my disability to people I don't know, but she goes, 'Because I have a grandson who is about your age and, you know, he would like to pursue a relationship. Have you got a relationship? How do you do it?' And I thought she was trying to hook us up, so that was really funny. But then we moved beyond that, and she goes, 'I want him to see somebody really, really good at what they do and how they see themselves and how they see people, because my grandson is quite impaired and he's not attractive because his body is quite bent and it looks difficult.' And she's telling me this and I'm going, 'Do you mean, do you want your grandson to see a sex worker?' And she's gone, 'Is that what they're called?'And so we went into this whole conversation, and I said, 'Look, there are sex workers who would be willing to see you grandson,' and I actually told her about 'Touching Base.' And she found a sex worker that was suitable for her grandson and she rang me back and she said, 'My grandson said thank you to me.' And this woman was 80, so you know I realised that people can be as open-minded as they want to be.
[Music]
John Blades: Gary, why do you think the subject of disability and sexuality has been ignored for so long by society, media and organisations?
Gary Fulcher: I think society has enormous trouble being able to talk about sexuality. So you have two kind of shameful, taboo areas: sexuality and disability. And so when you have, you try to combine sexuality and disability, again as you said earlier, double barrier. And if you throw homosexuality in there, well, you know, you just add to the mix.
John Blades: Triple barrier.
Gary Fulcher: Triple barrier. In the United Nations' Bill of Human Rights, the issue of sexuality and the need to be able to express sexuality is quite clear and yet, if you're disabled that is taken away, that right for sexual expression is eradicated by community. And I would hope that able-bodied people can start to have a sense that it's important for them to help the person with disability to be able to express themselves sexually and to feel comfortable about that.
Kylie: When you're actually talking about people having sexual relations or sexual interactions, people get very prudish. And it's only in recent times that people with disability haven't been seen as asexual, or the other myth is that they're sexual deviants. And people don't want to think about people with disability as sexual beings, and the people that we're talking about are adults—grown men and women—that have every right to be touched and caressed and have a smile on their face. And who are we to stop people from enjoying such basic things as what you and I do?
John Blades: I essentially can't move anything below the neck, but there is certainly a lot of life to be lived from the neck up.
[Music]
Family Planning Victoria offers relationship and sexuality education, counselling and group programs for children and adults aimed at maximising the individuals capacity to have whole and healthy relationships including expressing their sexuality. It would be good to talk to them too. Thanks
Reply Alert moderator
Pat Miller :
09 Dec 2009 5:30:54pm
You might want to address issues around the mandatory reporting of sexual "abuse" in (particularly) residential institutions, the faith-based morality imposed on people with disabilities by caring agencies and the nexus between protection and the opportunity to have a fulfilling sex life.
Moderator: Thanks for the suggestion Pat, the program is already completed and while these issues are not dealt with in detail the issue of a third party restricting the person with a disability's access to a sex worker is certainly dealt with.
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Matt J :
12 Dec 2009 3:06:42pm
Such a funny world we live in where taboos are applied to such natural and wonderful experiences. Thanks for telling your story John. Much appreciated and best wishes.
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Craig Andrews :
12 Dec 2009 6:27:36pm
Well done! John.
You should be very proud of this work!
Will link this up to the site real soon!
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Pavel Perina :
12 Dec 2009 6:39:44pm
This program was fantastic, thank you for your work John. It makes me very glad to live in country where people are brave, smart, passionate a caring enough to broadcast those issues of everyday life on public radio all over Australia. Well done & thank you!
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René Buhler :
12 Dec 2009 10:03:06pm
What a marvellous program! My son has an acquired brain injury, and this issue is just so difficult for him. I'm hoping that this program will have helped him to see that others have the same difficulties. And I'm hoping that Touching Base will be helpful for him. Thank you, John Blades.
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jennifer :
12 Dec 2009 11:05:39pm
this was a very moving program on several levels; hearing about how disease or other events can progressively take away autonomy gave me so much respect for the courage of disabled people. Just to get up in the morning and face another day. I say this because I suffer from lifelong debilitating depression, probably inherited, and its hard enough to get out of bed with this problem. I thought to myself: What if that was just the start of my problems? I don't think I could muster the courage to keep going, as you all have done and continue to do. Good on you.
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Warrick Alldridge :
13 Dec 2009 2:54:29pm
Blessed is the podcast !
Excellent work John !
A tastefully & respectfully compiled discussion.
The 'Extra Audio' interviews expand the topic to wonderful insight & food for thought on the broader 'disbability in life & the community' issues.
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Kelly McGuire :
14 Dec 2009 9:44:06am
What a confronting but moving show - thank you so much! With embarrassment, I admit that I've never thought about the issue of sex and the disabled but I have been thinking about the issue ever since. I know people with disabilities and believe that I'll now see them in a different, more human light. And those sex workers - I've never heard such intelligent, articulate words from our politicians - maybe they should trade places! And I bet that psychologist gets millions of patients now - such compassion - who wouldn't open up to him? But the stars were the disabled man and woman. They are wonderful people with wonderful men in their lives - a carer brother and a Dad who helped organised a male sex worker. I think those two have busted some myths!
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jane taylor :
14 Dec 2009 9:44:42am
Wonderful radio. I think you did a great job bringing that program to air.......slowly we're acknowledging sexuality as a human need. Beautifully interviewed.
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Manny G. :
15 Dec 2009 10:10:18am
What an absolute gem of a radio documentary. Technically brilliant! - great script, smart talent, good voices, tightly edited, intelligent use of sound and music. Subject? Story? ... where does one begin? Full of real love and truth, poignant, honest, personal, revealing and inspiring to say the least. With a 'Fireworks scene' even.No doubt this brave and intimate portrait will inspire some of us to put their 'shit' on the back-burner, and begin to feel life, not just go through with it. Thank you John. Thank you Auntie.
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Peter Cass :
15 Dec 2009 10:10:54am
I’ve just listened to a podcast of your program and wanted to congratulate you on a fantastic job. You have started the community on the road to not just realising the personal needs of people with disabilities, but the need to treat disabled people as whole people like everybody else. Your program is about more than just sexuality, it hits home on our need to give and receive love, affection and tactile appreciation no matter what our status in life is.
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ABC (Moderator):
15 Dec 2009 10:13:00am
Thank you for this program about people with disabilities and the need for touching. I was impressed by the courage of those contributing who gave such personal information so honestly and plainly to remind us of our humanity.
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Tom Bell :
15 Dec 2009 10:13:34am
That is one of the most informative interviews that I have ever listened to. I am a person with MS and I fully understand the message that was being presented. But it needs to be presented to a much much larger audience. The general population must be made aware of the realities of being a person with a disability.
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Tommy :
15 Dec 2009 12:37:47pm
I absolutely loved this insight into humanity, not disability. I found it extremely engaging and interesting. I was touched by the unhindered honesty of all the guests, and especially John talking about topics he's kept to himself for the last 27 years. Beautifully selected music and well thought out, I hope we hear a lot more from John in the future.
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smee :
16 Dec 2009 4:32:09pm
An interesting programme. I do congratulate the people involved for their openness and honesty: I couldn't do it! However, I do have a couple of comments that will probably raise the hackles of a few ... Firstly, as a person with a disability myself, I do not know if it is always necessary for a person with a disability to see a sex worker to gain fulfilment. As Caitlin demonstrated, there are people out there willing to engage on a romantic/sexual level with people with disabilities. I know heaps of people with disabilities that are in relationships, often with people who do not have a disability. I think, yes, it is harder for a person with a disability to find a significant other, as I do not deny that there is awful prejudice in society. I just don't think it is impossible. For me, if Mr. Right doesn't come on the scene, I won't be happy and it will take some getting used to, but it is obviously the Lord's will that I stay single, so I have to accept this. For me, I would also not consider seeing a sex worker. As a Christian, I believe that sex is a God-given gift to be shared between a man and a woman within the union of marriage. A sex worker, obviously, does not fit this category.
Once again, though, an interesting and thought-provoking program. although it was about disability and sexuality, I sincerely hope it challenged people to think differently about people with disabilities generally.
Reply Alert moderator
Matt J :
17 Dec 2009 12:32:29pm
Smee, with respect to your beliefs, I don't believe the program suggests a sex worker is the only avenue. Quite the opposite. I felt it was made clear that a sex worker was one avenue for those who wish to persue it.
Cheers & best wishes.
Matt.
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christopher :
16 Dec 2009 5:15:18pm
Hello,
what a lovely, stimulating programme......what a decent, ordinary, common-sense way to use radio. THANK YOU, john and kyle and all involved.
it's got me active...thinking of ways to be more loving/respectful to myself and others.
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John in Brisbane :
17 Dec 2009 1:41:59am
Thanks for this piece. I work with people with disabilities and we are wrestling right now with issues to do with our client's sexuality. Parents are heavily involved and are adamant that nothing sexual could ever happen. I think this makes them feel better while denying their adult children access to a major part of life. We see on a daily basis how much this hurts our clients and how it has led to aberrant behaviours developing in some cases. This is an issue most people just want to pretend does not exist. Thanks for this piece.
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Richard Dunn :
17 Dec 2009 5:18:37pm
What a brilliant piece of radio! So rarely are were exposed so directly and in such an engaging way with reality, in the best and most expansive - and intimate - sense of the word. Thanks John for having the intelligence, sensitivity and skill to draw out such mater-of-fact responses to a topic that is commonly avoided by the 'abled'. Yes indeed John, there is a lot of life from the neck up.
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ross miller :
26 Dec 2009 4:38:13pm
Hi, Great program. I have two significant sensory disabilities and have in the past fully experienced the isolating factors of these disabilities in generating relationships and engaging with confidence with others. However, at university, we did a clinical trip to one of Sydneys primary rehabilitation institutions for people with acquired spinal injuries. During a Q&A to the clinic supervisor, one of our students asked about rehabilitation & sexuality for a wonderfully attractive and bright young lady with a spine injury. The anser.."well, she is not married yet so we are not covering this issue"?????? This was a few years ago but even then it should have been an imperative part of human rehabilitation and acceptance of the young lady's future existance and needs. Much more to be done. Excellent podcast. Thanks.
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Stephanie :
29 Dec 2009 10:59:44am
Interesting to see the subject of disability and sex addressed as it is a subject that seems to freak people out. I am a filmmaker and I made a film 'DisPretty' (can be viewed at
www.portablefilmfestival.com) that is about the relationship between a man with cerebal palsy and his carer. The film challenges the positivist spin that the disability rights movement puts on disability by saying that someone can be disabled and not happy; can be isolated, feeling desire, anger, hatred - just like abled bodied people. The reaction to the film has been to shun it in certain circles but in others it has been embraced. A lot of people find the film very confronting and I think this comes down not only to the psychology, the emotions of it but also the frank showing of a disabled person experiencing sex and desire. So, I was glad to see a radio program that tackled the issue as well, albeit in a somewhat different way.
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Laurie Scott Baker :
07 Jan 2010 4:39:48am
too hard basket.
We found this programme moving, in a word profound!
This is not just about disability as my friend Ann Pointon, who was disability officer for Channel 4 (UK) used to say, we are all TABs anyway.
As someone who has worked for BBC for 18 years (including some radio) It is the best program I have listened to definitely in the last year, if it doesn’t win an award such as the ‘Sony’ I will be astonished. Brilliant timing and it is peopled by precious gems, human beings who tackle the issues in practice with depth and understanding. The structure and timing of the program I liken to the Bill Evans trio with Scott La Faro, cica 1961 ! And of course there is yourself, great stuff mate.
Laurie & Brigid Scott Baker UK
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Jessie :
10 Jan 2010 2:09:48pm
Thank you thank you thank you!
From a sex worker who also has worked in disabilities sector and has twin sister with brain damage- I enjoyed your show and well done for getting it out there- successful community education- somethings that don't even enter peoples head.. well done and get it out there... thanks for everyone involved!
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Beth Spencer :
17 Dec 2010 11:53:47am
Congratulations to all involved for the Walkley award for this program!
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B :
21 Apr 2011 12:22:16pm
What a wonderful, moving piece! I could hear the warmth and compassion of the sex worker and the connection their 'client.'
It is too bad that we are still living under Victorian attitudes around sex work in the United States, therefore restricting choice and access.
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