(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.
Equating love and sexual attraction may actually be problematic for the person whose body is paralyzed and atrophied, but who is no less loved.
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 filmThe Sessions, for which Helen Hunt got an Oscar nomination playing a surrogate who worked with a poet with polio. The story was based on the real experiences of poet Mark O'Brien, who ultimately 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."Anne-Marie Dickele of the National Ethics Committee 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 sexual surrogacy is in most countries, including the United States, 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 in coming 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 interesting 1986 documentary (on Netflix) called (groan) Private Practices. It follows surrogate Maureen Sullivan through her encounters with real clients -- men with issues like anxiety and premature ejaculation. Sullivan meets with them regularly, at first only to talk, and then gradually escalating physical contact.
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. As the world increasingly sees health care to be a human right -- Kathleen Sebelius and Barack Obama, like Franklin Roosevelt before them, 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 and Germany agree.
Marie-Francelyn Delyon, a retired French advocate for the disabled, disagrees. She told Rousselle, "It seems that people are saying we are incapable of inspiring love." She 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 stigma dissipate?
Near the end many of us will pay for people to help us walk, put food in our mouths, or change our diapers. We will get depressed at the loss of our essential humanity. Many of us will no longer have 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 adapted.
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 so much of our time managing expectations. With serious illness and old age, the job is largely about making the best of an imperfect set of circumstances. In ways this isn't much different. 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 with Friedreich's ataxia describes their relationship: "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."
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