Intimacy in an Iron Lung

The developing status of sexual surrogates for the disabled, as part of a right to health and well-being: So wrong?

(The Sessions/Fox)

"As my father lay dying and his private nurses washed him, made him comfortable and gave him his medication, they also lingered gently over his private parts as they sponged him. These were mountain girls from the state of North Carolina to whom death and sex were integral with life."

So comments Google+ user Ray Chatham in the discussion surrounding a short documentary released last week from The New York Times' Stefania Rousselle. Rousselle investigated the state of sexual surrogacy for disabled people in France, where it is contentiously illegal.

Surrogacy involves paying a professional who engages in intimate contact (broadly defined, though certainly not always intercourse) with a patient. It technically began in the early 1970s, and is maybe best known as something done to help people with extreme anxiety about sex to gradually work past it.

In a different sense, it's also used for patients with serious physical disabilities -- and, maybe even thornier, mental disabilities like dementia. You might remember the 2012 film The Sessions, for which Helen Hunt got an Oscar nomination playing a surrogate who worked with a poet paralyzed by polio. The story was based on the real experiences of Mark O'Brien, who by the end lived in an iron lung for all but a few hours per week, and ultimately lost his virginity to a surrogate.

In March, the French National Ethics Committee decided that sexual surrogacy was an "unethical use of the human body for commercial purposes." Committee member Anne-Marie Dickelé justified it to Rousselle: "The sexuality of the disabled cannot be considered a right."

But some French people like Laetitia Rebord, who is confined to a wheelchair due to spinal muscular atrophy, are campaigning passionately against the committee's decision. She's 31, a virgin, and wants to have sex -- "In her sexual fantasies, she is a fit and impetuous blonde who dominates her male partners." As she told Rousselle, "Eventually, one has to address the issue and understand why we are demanding this. I can't move. I can't masturbate."

The International Professional Surrogates Association notes that in most countries, including the United States, sexual surrogacy is simply undefined by law. It remains unregulated -- unless someone wants to allege prostitution, which could potentially become slippery, though it has not yet been successfully legally challenged as such in the U.S.

North Carolina-based sex therapist Dona Caine Francis says the distinction is that prostitution is about instant gratification, where surrogate therapy involves "months or many sessions in coming as you get to know each other and develop both this deeply personal and deeply therapeutic relationship first."

That's the way surrogacy is portrayed in the 1986 documentary (on Netflix) Private Practices. Director Kirby Dick follows surrogate Maureen Sullivan through encounters with real clients -- men with issues like anxiety and premature ejaculation -- throughout the course of their work together.  Sullivan meets with them regularly, at first only to talk, and then gradually escalating physical contact. Their relationships are clearly limited, finite, and tailored to address specific issues.

Sexual surrogacy for people with physically debilitating conditions invites a different discussion, probably because social anxiety is less outwardly appreciable as a barrier to a healthy sex life than, say, quadriplegia. The ends are also different: Sometime surrogates are working temporarily with clients to pepare them real-life sexual relationships; in these cases, they're standing in for them indefinitely.

As the world increasingly sees health care to be a human right -- Kathleen Sebelius and Barack Obama understand health care to be "not some earned privilege, it is a right'' -- it might seem a leap to not only fail to address sexuality in caring for people with conditions like Rousselle's, but to go the additional step of precluding them from procuring it for themselves. Holland, Switzerland, Denmark, and Germany agree.

Marie-Francelyn Delyon, a retired French advocate for the disabled, does not. She told Rousselle, "It seems that people are saying we are incapable of inspiring love." Delyon worries about stigma, that the practice would only drive disabled people further into shadows.

In advanced stages of illness, love and sexual attraction can grow increasingly disparate. Equating them may actually be problematic for the person whose body may be paralyzed and atrophied, but who is no less loved.

Were the practice more open and mainstream, and for a long while professionally conducted, would concerns over stigma dissipate?

Near the end many of us will pay for people to help us walk, put food in our mouths, change our diapers. We'll lose our relationships that afford close physical contact. Once a neuromuscular disease leaves someone incontinent, we as physicians can offer little to restore their abilities. The same is true when a stroke leaves a patient unable to chew his own food. We often can't restore these basic, humanizing parts of people. There is value in seriously considering every human element that can be preserved.

Surrogacy does not replace a loving relationship, and it should't be expected to. We don't refuse the help of a physical therapist because it won't be as good as having never gotten hit by a bus to begin with. When real love is on the table, take it. When the table is missing, or someone's axed the legs, then there are surrogates.

A fallacy of modern medicine is that anything less than perfect health or complete recovery is failure, or at least concession. Another is that accepting help and treatment admits weakness. As doctors we spend a lot of our time managing expectations. With chronic illness and old age, the job is most often about making the best of imperfect circumstances. Is sexual surrogacy necessarily so removed from invoking the help of any health professional? The grey areas are expansive, but so is the potential. 

Rousselle closes her segment with the story of Aminata Gregory, a 66-year-old retiree who now performs sexual assistance illegally in France. She is quick to distinguish herself from a sex worker, and sees herself as part of a progressive movement to normalize the practice. One of her regular clients, a 49-year-old wheelchair-bound man with Friedreich's ataxia speaks with buoyant practicality of his relationship with Gregory: "At the beginning of the session, we put ourselves in a bubble and become a normal couple. We talk to each other. We ask each other whatever we want. At the end of the session, we break the bubble. It's over. It helps not to fall in love."