For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.
But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.
I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.
But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.
Harriet McBryde Johnson, Too Late To Die Young,
This one may take some explaining.
So I’m fed through a J-tube, short for jejunostomy tube. That means a tube that delivers food directly to my small intestine. This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.
So I don’t taste food, and I don’t feel the sensations of food in my stomach. Instead, liquefied food goes into my intestines through a feeding pump, very slowly. It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t. So you have to drip it in slowly, usually over a period of hours. Some people have to do it 24 hours for a full feeding, while other people can go faster. I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.
I get two kinds of food. One is a formula called Osmolite. The other is homemade vegetable soups. I cook the vegetables and put them in a high-tech blender that can liquefy anything. Then I strain them through a chinois so they can’t possibly clog the tube. The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way. For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology. Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.
So here’s the joy part:
I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it. Most people’s experience of food is wrapped up in sensations of the mouth and stomach. Taste, texture, smell, fullness. I don’t get any of that. Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.
There is a feeling when you are digesting a food that is truly good for you. I get it from digesting vegetables most of all. Here, I am eating asparagus and split pea soup. The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.
And once I am digesting this food, I get to feel that way without anything distracting me. No taste, no texture, no sense of fullness. Just the joy of digesting something my body very much needs.
I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own. It’s an amazing feeling. I bet that if you ignored other sensations, you might find it underneath everything. But it’s a unique experience to feel it on its own. And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.
Osmolite makes me feel like crap by the way. I’m thinking of going rogue and designing my own diet. But that would take a lot of work, so I’m not doing that right away. (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid. It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well. There’s a lot of foods that overlap there, like resistant starches.)
People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating. But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.
And that’s what Harriet was talking about, these pleasures that are specific to being disabled. Not joy in spite of disability but joy because of disability. They are very real. And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot. Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die. I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.