Disability And The Last Taboo

The Age

Saturday November 29, 2008

CHARLIE STANSFIELD

In a world of sexual imagery saturated with perfection, where does that leave the realm of sexual expression for the "imperfect"?

I MET J in a bathroom in the winter of 1994. It was 4pm on the start of my first shift in a 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 onto a commode-like chair. She then fitted a plastic bottle onto 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 and then began twittering on about the Spice Girls.

Later, in a dining room with 20 others, I fed J small mashed portions of food with a hard rubber spoon. His wrists were strapped down onto 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. 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.

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 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, 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. 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.

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 programmed with words that he accessed by pressing on a keyboard. This enabled him to form a sentence. 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.

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. 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 discreet, 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 25 years - screwed up her face and said: "He just isn't like that." Colin sat with his arms folded across his belly and said: "You'll create a monster that will want it all the time."

The next concern raised was whether 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".

Around and around we went in offices and meeting rooms discussing J's request in hushed voices with various social workers and psychologists.

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 "woo-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 - OK? 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 1990s. 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.

"Kiss-hug, kiss-hug."

"And you might feel kinda lonely afterwards."

"Kiss-hug, kiss-hug."

"Are you asking me if you will get a kiss and a hug?"

He looked 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 Who magazine. 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.

"You must be J."

J affirmed loudly that he was.

"I'm Emily."

I handed her the $100 from J's wallet, and she led us to a small bedroom. 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.

It was well past an hour when Emily came out, 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."

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 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.

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.

On the drive home that February evening, J 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?"

He looked at "yes".

"Did it feel good?"

"Yes".

"Feel good all over your body?"

"Yes."

"Get a hug and a kiss?"

He paused. Looked 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."

Charlie Stansfield spent the 1990s working in the disability sector and this essay draws on real events. This is an edited extract of an essay from Griffith Review 22: MoneySexPower (ABC Books).

© 2008 The Age

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