This is a conversation between Nick and Zoë.  They cultivated this conversation especially for Commonplaces. Nick is an activist and writer who lives on ventilation. Zoë is an anthropologist and friend who does not.

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nick: They say that the fundamentals of life support and CPR are ABC (Airway, Breathing and Circulation).  I say that my A and B are just longer: the tube.

zoë: Remember, there was a moment when I was holding your breathing tube, keeping it out of the way of the chains attaching the sling to the lift as other friends and your support worker helped position you in bed? I was struck by how alive the tube itself felt as it wobbled on its own in my hand, much more like a creature than a machine. The tube felt alive, because it felt like it was breathing.

n: You asked me if I could feel it. The tube is an extension of me and I do feel it, and you’re right that it is alive because it’s me or at least part of my respiratory system.

z: So that was the feeling of you breathing. But also, in a way, of you being breathed, and the tube being breathed, and a whole sociomaterial assemblage in the midst of its animation.  So many things and people and forces made the specificity of breathing in that moment: A multiple breathing apparatus; the scene of a multimaterial and multimodal arrangement of a world. How could breathing be anything else?

n: That brings to mind the discussion of the term “ventilator dependent.”  Some (who are not on vents, notably) say the term vent-dependent should be excised, removed as part of a war on “the language of dependence.”  How ridiculous! Are we so in thrall to rugged individualism and man being “an island unto himself” that even dependence on air, which is what vent-dependent means, is cast as negative?   From my perspective, the term “vent-dependent” is not negative any more than “food-dependent,” “water-dependent,” “cellular metabolism-dependent.”  

z: Ha! And if the alternative to “the language of dependence” is supposed to be a “language of independence,” or even a universal humanism, then the vent is particularly unsettling to the foundational liberal idea of the singular, bounded, whole, human, natural, rights bearing body proper that such languages voice.

The vent insists on a more-than-one-and-less-than-two-ness of more than human being in a way that exceeds other body penetrating technologies, like cochlear implants or spinal stimulators. Those can be cast as freely chosen personal and political additions and do not appear as supplement to the particular political biontology that cannot abide it. That form of the person is uncongenial to life support. It is stingy with life.

n: Part of the problem is that mainstream film and TV only presents the ventilator in the context of its heroic withdrawal as “worse than death,” “no way to live,” in an end-of-life storyline. The truth is far more multifaceted. The ventilator is used in support of early and middle phases of life, not just for dying.

z: You know, there’s an analogue to that death-boundedness in social theory.[i] But your description of ventilation helps us get a handle on the situation that isn’t hinged to life and death (and need not hinge them to each other). Like how your description of feeling by reference points out constitutional attachments: how life registers in and composes a body as bodies find and feel themselves together.

n: Feeling by reference is like this: the lungs don’t have nerve endings, but we still feel what’s going on with them by referencing changes in chest rise and fall, changes in the way that the air moves in the throat (which does have nerve endings) and the way breaths play against the carina (that weird flat place where the two primary bronchi meet, borderline above the lungs) which has some sensation, at least for me. The tube is, in a way, experienced as something akin to a hair: the tube moves or pulls or is touched, I feel it acutely with great sensitivity from its “root.”  Meaning you move the tube anywhere or touch the tube even two feet down, I get feedback in the tracheostomy that I feel, feeling by reference.

z: So the feeling of your exo-airway can also be the touch of a friend like me participating in your life. My own breathing — with two quite robust and compliant lungs — is made up of other things, including regulatory regimes that police air and industrial emissions, which also articulate with forms of capitalism and their geographies, regulations, and desires in such a way that, for example, while I was in a jet on my way to an Orlando resort last month, the air in Shanghai had become toxic.

Or take the colliding topographies of fungi and investment in California in which prisoners breathe in and are sickened from Coccidioides immitis 3,000 times more often than freely-mobile residents of the state, or the way geographies of class and capital make asthma endemic to impoverished urban neighborhoods.  Which is only to point out the obvious: My breathing is made of (relatively) clean air in the places I willfully travel to and reside in, a historical and political state of affairs capacitated by, and collateral to, the production of toxic and illiberal breathing in places I willfully avoid.

n: Whenever I go up in airplanes, I become really aware that we are way, way above the breathable atmosphere, and realize that the breathable atmosphere is this low, thin envelope, a shared resource that’s much thinner, smaller and scarcer than typically presumed.  All the methane, CO2, etc etc we pump into the envelope has no way to escape en masse. Only a small fraction can escape to outer space, so is inevitably taken into our bodies and the bodies of the numerous non-human species we rely on: the soil, the oceans, everything.  It’s like this terrifying realization that the assumptions underpinning the socio-economic system of the entire world — the idea that the space for pollution is vast and includes everything from floor up to the ionosphere and outer space too — is as wrong as “flat Earth.”

z: So, if we try to breathe it all in: Your encompassing breathing apparatus — an apparatus that points to the bio- and necro-politics of breathing as much as its mechanics, feelingfulness, and sociability — productively confounds our ability to make distinctions between one (living?) thing and another. I was going to say that your breathing helps us think life support as something more expansive, but maybe it’s the other way around. Thinking life support with you makes breathing something more expansive.

n: It’s both.  Technology has changed how serious disabling conditions, injuries and chronic illnesses are survived and lived.  As we clumsily and uneasily stumble forward into a piecemeal cyborgian society, there will be more like me, whose existence as a co-existence with numerous relationships, social programs and technologies supporting life can’t be ignored.  The interdependent “assemblages” that support all our lives — incompatible with the typical conceptions of individualism, self-sufficiency and self-defense — are, for most, luxuriously backgrounded and subtle.  But when you’re wearing part of your respiratory system in front of you as easily as businessmen wear ties and every movement happens with assistance from the people around you, interdependence is irretrievably foregrounded, with breathing itself dependent on multiple outside factors.  That most people’s lives are lived with more similarities to this “total interdependence” than differences means that even the air you breathe being outside of your direct control is a BIG IDEA with sweeping, sometimes terrifying implications.  

Zoë Wool is a postdoctoral fellow and lecturer in the Department of Anthropology at Columbia. She works on the intimate, carnal, clinical and political making of fleshy life for severely injured American soldiers, and is also beginning a new project about scientific renderings of psychosomatic soldier bodies since the mid-1800s. Her first book, tentatively titled “Emergent Ordinaries: The Weight of Life at Walter Reed” will be published by Duke University Press.

Nick Dupree is an activist and writer in New York City.  He has been on forms of mechanical ventilation since 1992, and is best known for his campaign in Alabama “Nick’s Crusade,” which ended in a new Medicaid program to extend home care past age 21 for vent-dependent Alabamians.  He studied at Spring Hill College, a Jesuit college in his hometown, Mobile, AL on the Gulf coast.  He continues to work on projects to articulate and advocate for the interests of people on ventilators, and blogs about topics as varied as The Constitution, Medicaid, and dinosaurs at www.nickscrusade.org. [Editor’s note: Nick passed away in February of 2017.]

Image: “Thin Line of Earth’s Atmosphere and the Setting Sun.” NASA, Wikimedia Commons.