Capable and willing

[Update - Crass Pollination readers can go here.]

It seems to me the question of a right to health care is related to another problem: our health care system ignores a lot of pretty ordinary rights that sick people ought to enjoy. Some folks assume sick people are demanding additional rights, when what we really want are the rights that everybody else enjoys. Privacy, for example, has been a big one, and so efforts like HIPAA and Patient’s Bill of Rights are worthy (but imperfect). More generally though, the sick person is often treated as if their illness can and should prevent them from enjoying their basic humanity. If you don’t know what I’m talking about, bear with me.

This isn’t another rights post – not exactly – but I want to point out one approach to rights, in which questions of rights begin with the question, what is a human? This approach has its roots in Aristotle, but more recently has been argued by Martha Nussbaum. In her essay, “Human Capabilities”, she argues that “the central goal of public planning should be the capabilities of citizens to perform various important functions”.

The sorts of things she has in mind are being able to live a normal lifespan, being able to move about, being able to obtain adequate nourishment and shelter, having opportunities for sexual satisfaction, being able to laugh, to play, to enjoy recreational activities. She draws a distinction between capabilities and functions; “can a person do it?” is a different question from “is the person doing it?” The problem is that too often we presume that because someone isn’t doing it means she can’t do it – especially when it comes to matters of women’s equality. If we assume a person can’t do something as a matter of biology or gender, we don’t have to worry about laws or rules or mores that keep them from doing it in practice.

But “can” and “is” are also a pretty important questions, from the point of view of a chronically ill person. A lot of times, sick people are treated as if all other aspects of the patient’s life take a back seat to the illness. Maybe that  makes sense for acute illness, but for the chronically ill person that can mean ignoring broad swathes of one’s humanity for years at a time. There are a lot of activities I have been told not to do, or not to worry about, only to discover much later that I could and should have been doing them all along – that I would have lived a much fuller, much more human life for having done it. This includes things like sports and travel, but for the rest of the post I want to focus very specifically on one “it” – the it – namely, sex.

Enjoying the ordinary human capability for sexual satisfaction can be really, really tough when you’re sick. In my experience, doctors ignored my romantic life unless I specifically complained about it – and it’s hard to talk about. I mean, I know where their interests lie, but it’s pretty cruel to a) give a twenty-something male a drug that cripples his libido b) without telling him it will do so, and c) keep him on the drug indefinitely. Some of this isn’t any doctor’s fault, at least not directly – the physical manifestations of being sick can make a person pretty unattractive. Not that I was Brad Pitt to begin with, but being twenty pounds underweight doesn’t help. Still, when I asked for help gaining weight, I was often told “let the medicine work” – which it never did, except prednisone, but moon face was no sexier. Even just the sheer amount of energy I had to invest in keeping myself healthy-ish made it hard to spare time for dating or  hunting for hookups (not that I endorse the latter approach).

So I take great pride in the few times my essential humanity triumphed against tremendous obstacle – namely, the times I did it in the hospital. Apart from prison, I don’t know of any place less hospitable – ha! – to human normalcy than the hospital. In the hospital, people are deprived of privacy, mobility, adequate nutrition – all sorts of basic human capabilities, including opportunities for sexual satisfaction. The irony is that although I often felt somewhat better in the hospital – that is, more capable of getting up and moving around, eating better, having sex – the place itself made these activities incredibly difficult. In those circumstances, very simple things could be extraordinarily liberating – sneaking out for fresh air, or smuggling in a delicious sandwich, or – well, you know….

Rather than go into gory detail, I will instead offer some general pointers for hospital sex. I urge you not to think too hard about how I know these things, but instead focus on whether they might help you the next time you’re inside.

• Don’t look to the nurses, medical staff, or other patients as potential sexual partners.

• Ask your doctor when you’ll be ready for full sexual activity. If the wait is too long, say so. Ask whether you can fool around before then.

• If you’re in the hospital, and your partner wants to give it a try, you are fully entitled to refuse. That said, there are lots of things short of full penetration that provide a decent approximation of sexual intercourse.

• You can ask a nurse for thirty minutes or so of privacy, with no further questions. Usually, you’ll get it – and a good nurse will keep any intruders (techs, chaplains, other visitors) at bay.

• You can be asked to be disconnected from your IV for a while. If you’re already thinking about sex, you probably won’t die for a half-hour off the needle.

• If you have stitches or staples, go slowly – and don’t go all the way. You don’t want involuntary spasms ruining all that hard work.

• If you’re a guy and you’ve recently had a catheter, you may experience some pain while doing it. That should go away after a while, but definitely tell your doctor if it doesn’t or gets worse.

• There are various sorts of massage products that both make for pleasant foreplay and meanwhile diminish the body funk of a long hospital stay. You can get small containers for less then ten bucks in lots of places.

• If you have a roommate, you can suggest a night-time dose of diphenhydramine to help them sleep. Once they’re under, you have at least an hour of relative privacy.[Edited for frivolity.]
• Barring that, the showers in most hospital rooms have a sturdy fold-down bench. A few towels can make it more bed-like.

• Use barrier protection if you’re getting meds. I’m not 100% sure, but it seems to me that various secretions can contain trace amounts of drugs. I could be wrong, but you don’t want to risk an allergic reaction by your partner.

• Heart monitor? Rock it like a beatbox. If anyone notices, say you were watching Fear Factor.

So now you’re maybe giggling a little, but probably thinking, “this is all way too embarrassing to actually do for real.” Look at it this way: in the hospital, we’re surrounded by people who already know every minute detail of our bodily functions. They’re measuring our piss, for crying out loud – isn’t that embarrassing? Yeah, we don’t have a lot of privacy, but the people around us are at least supposed to have our well-being in mind. If doing it is part of your well-being, then do it. Your nurse might even be a little bit proud.

I’m not arguing that Nussbaum’s approach gives us the best understanding of rights. I do think it raises some interesting and difficult questions for the health care system in this country, and these are questions we ought to be asking. In a perfect world, having sex in a hospital wouldn’t seem like such a big deal – it would just be an ordinary part of humans living their lives as best they can, despite awful circumstances. But we don’t live in that world. In the real world, sick people are too often treated as either biologic failures or raw commodities, with our essential humanity a secondary and distant concern. It’s left to us to insist that we be treated as ordinary humans, with everything that entails.

*In Nussbaum and Glover. Women, Culture, and Development. (Oxford 2001)

Tags: biog, care, docs, ills

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