Memoir: The last taboo

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. 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 asked whether he liked the band, if he had seen them live and then began twittering on about the Spice Girls.

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.

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.

At the time, the large charitable agency that operated the hostel and the day services J 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. 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.

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”.

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. 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.

He-wants-you-to-help-him-get-laid.

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.

One concern was whether or not J understood what seeing a sex worker involved. There were exaggerated fears of his vulnerability to contracting an STI, 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.

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.

“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. But apart from that I don’t want to know anything more about it - OK? You’re not doing this with my permission. And don’t bring me any bloody receipts.”

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.

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.

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.

Sex worker Saul Isbister and a small group of colleagues established the non-government agency Touching Base 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.

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.