Sex is what you do, sexuality is who you are.
– Anna Freud
I MET J in a bathroom in the winter of 1994. It was 4pm on the start of my first shift in a brand new job, a time I would later come to know as rush hour. There was the sound of people chattering over splashing water and a smell of urine and lavender soap. The bathroom was a draughty space with high ceilings and a line of cubicles with flimsy shower curtains. Underneath, I could see pairs of feet in rubber thongs moving briskly on the tiled floors.
I hovered in a doorway, until a shower curtain was pulled open and I faced a wet and shivering man with dark eyes and a huge smile. Tepid water and suds dripped all over his body. I was handed a white towel. Since no one had introduced us, I said ‘G'day, I'm Charlie' before tentatively beginning to pat him dry. A nurse asked me to help lift him on to a commode-like chair. She then fitted a plastic bottle on to his penis, securing it between his thighs. She told me to wheel him to the large dormitory-style bedroom and ‘just keep an eye on him'.
The six beds that filled the room all looked the same, but J inclined his head towards one in the corner where posters of the Spice Girls had been tacked up on the wall. I had never before sat in a room while a young, naked, good-looking man urinated into a plastic bottle – my conversational gambits were lacking. J came to my rescue by nodding towards the poster. I asked whether he liked the band, if he had seen them live and then began twittering on about the Spice Girls. We were interrupted five minutes later by a grossly overweight man wearing shorts and a white plastic apron who identified himself as Colin, and without saying another word kicked the brakes on the commode and whisked J away.
Later, in a dining room with twenty others, I fed J small mashed portions of food with a hard rubber spoon. His wrists were strapped down on to a tray in front of his wheelchair. I learned later this was to contain strong muscle spasms that could cause his arms to flay wildly, inadvertently punching anyone who got in the way.
J communicated by looking at a series of cartoon-like symbols on a board attached to the tray. By following his gaze, I pointed to a symbol, vocalised to check, and used this as a starting point to a conversation of sorts. Other than that, J's gaze went left for yes, right for no. The limited number of symbols meant that the conversation continued only by me asking as many closed questions as I could. He would then answer ‘yes-no', raise his eyebrows and incline his head as if to say ‘And you?' I would then answer the same questions. That night I learned he had lived in the hostel all his life and had no close family. He didn't like the food but liked to drink beer, and Emma Bunton was his favourite Spice Girl. He learned that I was single, from the United Kingdom and Geri Halliwell was mine.
Most of J's day was taken up with the daily activities of living. He required assistance to get up, shower, get dressed, shave, eat, drink, shit, get to any appointments or activities, and get back home again at 4pm. He and the other twenty or more residents would then be lined up outside the communal bathrooms to begin the shower process again. J could be lifted, transferred, dressed, undressed prodded, pushed, touched by up to a dozen or so different pairs of hands each day.
The communication symbols he had at his disposal – food, drink, bed, toilet, sick, man, woman, radio, television – reflected the life he led. However, he made quick and creative use of the limited vocabulary. That first night we met, he nodded across the dining room just as Colin knelt down to pick something up, displaying an enormous builder's crack spilling out of a pair of shorts. Having drawn my attention to it, J indicated ‘sick', then laughed wickedly.
After I had known him for a few months, J managed to convey that he wanted to go to a pub. So, one afternoon on a group outing, I left the other worker with a group eating fish and chips on the beach while the two of us dashed down Manly Corso for a beer in the Steyne Hotel. J persuaded me to help him skull three bottles of beer before I insisted we go back to the group. By this stage he was glassy eyed, pink faced and eyeing young women on the street. He'd look up at me and back at them, strain forward in his chair, laugh and make a ‘whoo-hoo!' call, oblivious to any strange looks. When we got back to the group, he fell asleep and remained that way, snoring for the rest of the afternoon.
At the time, the large charitable agency that operated the hostel and the day services he attended was in transition. Legislative changes meant that government funding became conditional upon meeting individual needs rather than maintaining institutional arrangements. Standards were set for services to meet. The people we worked with and for became ‘consumers', not ‘clients'. The changes, though slow, led to an opening up of opportunities in accommodation, employment, leisure and education. J moved into a small group home with three others. Some of the staff from the hostel moved with him. We increased our commitment to individual choice in recreational activities, but there was a lack of both wheelchair-accessible places and hands-on staff. The bowling alley and movies continued to be regular haunts. Community colleges ran courses on ‘Legal Rights' and ‘Making Friends'. Some time later, two trainers from the Family Planning Association were invited to present a groundbreaking course on sexuality.
LOOKING BACK, IT seemed to take a woefully long time to pick up that J's desire for sex radiated from his body like an aura. He didn't have a symbol for ‘fuck' on his communication board, but he didn't need it. His non-verbal equivalent of wolf whistling whenever he saw young women on the street or sex scenes on TV was enough to convince me of his desires. I came to realise that, like a lot of young men of his age and frankly hedonistic personality, he was far more interested in drinking beer and having sex than making friends or going bowling.
After J attended the sexuality course, we had the same conversation for months. I kept repeating myself to ensure I had understood.
‘You want to have sex?'
Nods at the left ‘Yes' side of his communication board.
‘Do you know what sex involves?'
More nods, looks at ‘Yes'.
‘Who do you want to have sex with?'
Looks at the symbol for ‘Woman'.
‘Which woman?' I asked, unfairly teasing him. ‘Old woman?'
Looks at ‘No'.
‘Woman here – in this place?'
Looks at ‘No'.
Looks at ‘Yes'. Then nods at me.
‘Me?!' I shriek.
Bursts out laughing. Shakes his head. Sighs. Looks at ‘No'. Then looks back at me meaningfully.
In the end, I enlisted the help of M – who had grown up in the hostel with J. M's family had bought an overseas model communication system pre-programmed with words that he accessed by pressing on a keyboard. This enabled him to form a sentence. He then hit a button to activate a voice. It had a disconcerting American accent. M came back to me after his chat with J. With his left hand, he steadied his right arm and then used his right thumb to laboriously press each word out on the keyboard.
At this point in the story, I would like to be able to say that I went ahead with making arrangements to help J without any qualms or unnecessary delays – but I didn't. It didn't occur to me that the most obvious answer to J's request was to take him to visit a brothel. I asked M how I was supposed to help. He looked at me as if I was simple, and said ‘Pay!'
Apart from any personal politics I might have had about engaging with the sex industry, there then needed to be a number of discrete, informal conversations with one or two other staff involved in J's life. At a meeting where the subject was first raised, Moira – who had worked with J on the early morning shift for twenty-five years – screwed up her face and said, ‘He just isn't like that.' Colin sat with his beefy arms folded across his distended belly and said, ‘You'll create a monster that will want it all the time.'
The next concern raised was whether or not J understood what seeing a sex worker involved. This became the dilemma about informed consent. There were exaggerated fears of his vulnerability to contracting an STD, or receiving a service he hadn't asked for, and experiencing it as a sexual assault. It seemed ironic that those staff who most questioned J's ability to make an informed decision were themselves quite misinformed about the operations of the sex industry. My main fear was that J could pay for a service, but once alone in a room with the sex worker he might get ‘ripped off'.
At the time, J's yes-no response was deemed adequate and informed enough to take him to a hairdresser or physiotherapist. The year before he'd consented to taking his first trip out of New South Wales to the Gold Coast. Every day he took medications a doctor had prescribed. He may have grown up and learned about his sexuality sporadically from television and gossip, but didn't we all? Having had sexuality training and education he seemed more prepared than most people were before first having sex. Why couldn't he give a valid consent to visit a sex worker?
Around and around we went in offices and meeting rooms discussing J's request in hushed voices with various social workers and psychologists. One said that our commitment to ‘normalisation' meant we should be helping him form a friendship with another young woman with a disability, rather than organising for paid sex. Another raised fears about him getting overly attached to the sex worker and then getting hurt. All of us were ignorant of any sex worker ethics, such as sensitivity to and respectful treatment of the emotional dependency of any client, disabled or not. There was an unspoken assumption that because J was physically dependent, he was also emotionally and intellectually dependent. The reality was he had lived in institutional care his entire life. All of his daily living activities were performed by paid staff, and while he did develop attachments to people, he didn't seem to suffer too much when they moved on. I felt sure an experience of unrequited love wouldn't hurt him as much as living his entire life in a state of unrequited lust could.
As we all procrastinated under the guise of ensuring he didn't get hurt, the outside world conspired with J. Each occasion I spent time with him, and tried to divert attention from the topic, something would come up. The Spice Girls gyrating on TV. The billboard ad for underwear. Even at the supermarket, where a low-cal chocolate bar promoted by young women in high heels and swimsuits prompted his laughter and ‘whoo-hoo!' J was never short of an opportunity to draw attention to the fact that sex was everywhere and he wanted some of the action.
‘There isn't a policy for what you want to do.' J and I sat on either side of the manager at a meeting for the final decision.
‘You,' he pointed at me, ‘are putting yourself at risk of being charged as an accessory to a crime if anything terrible happens.'
‘And you,' he pointed at J, ‘are putting yourself at risk of disease, financial ruin and god knows what else ...' he trailed off. ‘You know, it won't be like the movies, son.'
J looked left for ‘Yes'.
‘I just cannot sanction what you are doing,' the manager said. The air of disappointment lifted a little as I registered: Are doing?
‘There is a bus available on Saturday night. I will roster you on and get the money from your account, J. There's plenty in there at the moment. But apart from that I don't want to know anything more about it – okay? You're not doing this with my permission.'
I breathed out, and looked at J.
‘And don't bring me any bloody receipts.'
SO IT WAS one hot February evening in the late ‘90s. I took J to the place we'd found in the yellow pages. We parked in the street. As I was unloading him from the bus in his wheelchair, he indicated to the two new symbols on his communication board ‘kiss?', ‘hug?' I sat on the ramp with him on the pavement so we were eye to eye.
‘The first time is usually not much cop, mate,' I said, trying to be light about it.
‘And you might feel kinda lonely afterwards.'
‘Are you asking me if you will get a kiss and a hug?'
Looks at ‘Yes'
I felt my chest tighten.
‘I don't know, mate,' I said. ‘We can ask.'
It was hard work getting J's wheelchair up the front steps of the building and manoeuvring us both into a small lift. We arrived on the first floor, squeezed out and then fell through a beaded curtain into a reception/bar area.
A pale woman with spiked red hair sat with a set of playing cards fanned out in front of her on the bar. Perched on a stool opposite was a young Thai woman in sparkly evening dress, engrossed in WHOmagazine. Another woman with glasses and honey-blonde hair tied up in a bun came over to us, smiling. She looked just like a school teacher. Time stood still. I felt as though I had wandered on to a film set without a script and was waiting for someone to yell ‘Cut!'
School Teacher said, ‘You must be J.'
J affirmed loudly that he was.
I handed her the $100 from J's wallet, and she led us to a small bedroom off the reception area. I explained the left-right ‘yes-no' – all J could communicate once out of his chair and away from his communication board.
The two of us lifted J out of his chair and laid him on the bed. I undressed him to his underpants. Emily said I could wait in the bar. I asked whether I should leave now, and J looked at left-yes. I looked at his twisted skinny legs resting on a towel and his trembling arms spread Christ-like across the sheets and asked him whether he was sure. He looked left-yes. I wanted to confirm with Emily what we had agreed on the phone, but it seemed crass. At the doorway, I winked at J. He stared straight through me to some other distant place.
I sat in the dim light nursing an orange juice, trying to relax. Dressed in an old sarong, t-shirt and a pair of Birkenstocks, I felt like I ought to have made more effort. Redhead woman looked me up and down and asked whether J was my baby brother. There was a large digital clock on the wall, and an analogue face on the bar. I checked both repetitively.
After about half an hour, a middle-aged man came in, glanced around and then approached me at the bar.
‘You want to party, love?'
I was somewhat taken aback. ‘Party?'
‘You working tonight, love?'
Redhead snorted into her drink. We both stifled giggles. Sparkly Gown reluctantly put down her magazine and stood up.
It was well past an hour when Emily came out of the room, her hair down on her shoulders. I caught a glimpse of J through the crack of the door. She said loudly, ‘Well he might not be able to talk, but there's nothing wrong with him down there.'
I went in. J looked up and I winked again. There were three torn condom wrappers on the floor. I dressed him and we got him back in the chair. He was silent as we left, nodding briefly to Emily as she air-kissed him goodbye.
I drove back home, trying to make him laugh.
‘Do you know what happened? A bloke came in and thought I was a sex worker!'
No sound from J.
‘He must have thought there was a new Spice Girls cover band – Old-Red Spice, Sparkly Spice, School Teacher Spice, and this week's special, me – Hippie Spice!'
J grunted politely.
‘Emily was very pretty, wasn't she?'
He was quiet. I looked in the rear vision mirror and met still, brown eyes. I didn't want to intrude, but ...
‘So did you like it, mate?'
Looks at ‘Yes'.
‘Did it feel good?'
Looks at ‘Yes'.
‘Feel good all over your body?'
‘Get a hug and a kiss?'
He pauses. Looks at ‘Yes' then ‘No' then ‘Yes' again.
‘Was it worth all of this mucking around and me nearly losing my job?'
Big smile, laugh, forehead anointing the left side of the communication board in an exaggerated head-bang.
‘Yes. Yes. Yes. Yes. Yes.'
IN THE DECADE plus since I worked with J, anti-discriminatory and other human rights-based legislation has improved access to employment, accommodation and recreation for people with disabilities. In the big picture, pursuing rights in these areas has tended to push sexual rights lower down on the agenda. Other than the important work on uncovering stories of sexual abuse of people with disabilities, the field is quiet on the issue of sexual rights. Fourteen years on, J would have had to face similar barriers. Sexuality, and more specifically the use of sex workers, remains an unresolved, uncomfortable issue for some of the larger agencies supporting people with disabilities.
Most agencies point to the legal situation as the reason for their unease – specifically, a section of the New South Wales Crimes Act 1900 that relates to procurement, where the wording is ambiguous and open to various legal interpretations: ‘whosoever procures entices or leads away any person (not being a prostitute), whether with that person's consent or not for the purposes of prostitution either within or without NSW, shall, notwithstanding that one or more of the various acts constituting the offence may have been committed outside NSW, be liable for imprisonment for seven years.'
The procurement law – initially developed as ‘anti-pimping' legislation – does not take into account that some people with disabilities require some form of assistance to make and then keep an appointment with a sex worker.
Agencies that are historically parent driven, well established and have a high profile for the charity dollar have adopted conservative legal advice in this matter. They are the agencies that cater for people like J, whose backgrounds attest to a lifetime of environmental and social disadvantage. No one knows of a case where procurement law has been tested, and most staff are very doubtful there would be circumstances where a consumer may want to take legal action. However, no agency wants to be the ‘guinea pig', fearful of the publicity that might surround the issue.
The New South Wales Disability Services Act 1993 creates an obligation to meet the individual needs of consumers, including those relating to the expression of their sexuality. Sadly, it is an aspirational piece of legislation, and standards cannot be enforced by any civil action. This prevents a consumer from suing for ‘breach of contract' if they cannot be provided with a service that meets their needs for a sexual relationship.
It does seem that, while initial fears centre on protecting a consumer from any emotional or physical harm while pursuing paid sex, a significant underlying concern is actually about protecting the agency and its staff.
A service provider put it this way: ‘We do what we can. We provide sex education to consumers. We allow staff to represent us on lobby groups like "Touching Base". We run groups on forming friendships and relationships for younger people with disabilities. We support them to participate at SEXPO and Mardi Gras. But when it comes to giving approval to our staff to take people to a sex worker or a sex surrogate, or to directly assist two consumers with a sexual act if that is what they want, the policy is clear: they cannot be permitted to do that.'
WHEN I CONFESS to sex worker Saul Isbister that my concern all those years ago was more about whether or not J would get ripped off, his response is generous: ‘A recent study on trustworthy professions showed that sex workers were ranked only two places higher than politicians,' he laughs.
It could be said that sex workers suffer from similar stigmatisation and misunderstanding to that faced by people with disabilities. Both groups are vulnerable to being perceived solely in terms of their sexuality (or lack thereof), while also being shamed for being sexual. Both are more likely to experience sexual assault compared with other professions or groups of people. People with disabilities dependent upon personal carers have reduced opportunities to set boundaries. Sex workers are often perceived not to have any boundaries at all in relation to sexual activity. Both sex workers and people with disabilities challenge our myths of ‘naturalness'. In order to cope with any discomfort they might provoke, we push them to the fringes.
Saul and a small group of colleagues established the non-government agency Touching Base (www.touchingbase.org) in 2000 after recognising their own needs for training in providing services for people with disabilities. Touching Base was developed as a pragmatic response to the needs of both groups, as Saul said: ‘While training in sexual health counselling, I started to see that there could be issues with communication and consent and also recognised that practical skills such as the best way to assist someone with a spinal cord injury could assist me. The alarming statistics regarding high rates of sexual assault of people with disabilities made me want to ensure that people I saw would receive a service that did not in any way replicate any abuse they may have previously experienced.'
In a world where perfect bodies, youth and beauty are seen as the only prerequisites to a good sex life, someone frequently perceived as an object of care or pity faces huge challenges in developing a positive self-esteem and a healthy sexuality. Of course, it is not necessary to have sex in order to be sexual. There are plenty of sexy celibates. But there's nothing sexy about enforced celibacy, when the odds of ever falling in love and having a relationship are stacked against you. People denied opportunities to come to know their own bodies or to experience their own or another's caress may have a greater need for a direct experience of sex to affirm themselves as sexual beings.
While not everyone would want an experience of paid sex to be the first option to meet the need for a relationship, equally sex workers shouldn't be seen as a providing a substitute ‘normal relationship' (whatever ‘normal relationship' means). Sex workers can provide a different sort of relationship, no less valid than others, that can fulfil the human need for contact on a range of levels. As Saul explained: ‘There are a lot of misconceptions about what sex workers actually do. People think we sell our bodies. They don't know that sex is not the only outcome.'
The question most often asked about J's story is whether it was the right thing to do to help him on this one occasion, knowing that it might be hard for him to organise a repeat. Only J can answer that. My guess is that it would not have been an isolated experience. Someone like J who can express their sexuality repeatedly, tenaciously, in a language frequently dismissed or misunderstood, has a talent for communication. That talent and irrepressible spirit will always be able to cut through the protestations of legislative or policy-speak to find a way to be heard.