January 25th, 2013 / 5:02 pm

DIED: The Verbessem Brothers


Marc and Eddy were deaf and learned that soon they would both go blind. They were 45 and twins. Because they were Belgian, the option of assisted suicide was available to them. Believing they would no longer be able to live self-sufficiently, and to communicate with each other and family (they had developed their own sign language), they chose death by lethal injection. Before they died, they had coffee.

There are legal questions and there are cultural questions: Should a state allow assisted suicide in non-terminal cases? Does our shared narrative about what it means to be human devalue disability so that living with the loss of one sense might be tolerable, but living with the loss of two is untenable? See Betty Coumbias. See this statement from the President of the National Federation of the Blind.

I keep coming back to what I think are—if I am remembering my philosophical branches correctly—epistemological questions. I experience the world through the five senses I was born with. One of those senses (my sense of sight) has been, through years of sitting at a computer, minimally limited. I have corrected that limitation with glasses. One of my senses (my sense of hearing) has been even more minimally limited by age; by years of attendance of loud, live musical performances; by years of learning to tune out the noise of living in a city, living next to streets full of cars. Temporarily, one of my senses (my sense of touch) was dulled at the tips of the fingers of my left hand because of callouses that formed through the repeated forming of chords on the fretboard of a guitar. My sense of smell isn’t precisely as good as it used to be because I smoked for years. My sense of taste, too.

Sometimes I can see, and ignore completely what I am seeing. A moment ago, trying to come up with the next section of this blog post, I turned my head away from the computer and stared out at the street. But even though I was seeing the street, I wasn’t noting any of the details of the street. I was seeing but wasn’t actively participating in the act of seeing. Sometimes I hear a sound and it takes a little while for that sound to enter into the chorus of things my senses are experiencing and things I am thinking about.

But then—as it just happened—a car enters my field of vision large, fast, and red, and a horn is honked, and it demands my attention. And my eyes take over. And my ears take over. Those two first. Those two primarily.

I suppose this is evolution, yes? The eyes and the ears are the organs that sense for the senses that we evolved mostly to keep ourselves alive. They protect us.

So, one imagines there is, deep within our brains, a part of us that reacts to the loss of both hearing and sight with: “I will no longer be able to adequately protect myself from predation.” And it would work in concert with the more thoughtful part of our brains that might say: “I will no longer be able to take care of myself in the way I currently take care of myself. My experience of the world will become limited in a way that I currently can’t imagine, and I will face difficulties I currently can’t see facing.”

I try to understand this.

Further complicating the way the brothers experienced the world is the way they communicated. They had developed their own sign language. Their family could speak to them with it, but I don’t think it’s unfair to speculate that no one could communicate through their shared, created language with the complexity and nuance of the brothers. And their language was visual. I am picking through my thoughts, processing my feelings about the death of the Verbessem brothers through language right now, through the act of communicating with you. I need it to make sense of this. I need it to make sense of everything. What if I lost it? What if I lost the visual part of my language toolbox? What if I couldn’t type a sentence and see a sentence and change a sentence and see the change? What if I had to change the way I worked with language?

And this: I live with someone, and we speak to each other with a nuance and a complexity that is, I’m sure, sometimes beyond others who join us in conversation. But then, we get it wrong all the time. We miscommunicate all the time. The language we use to communicate is one we were given, though. Our mode of communication was imposed on us. If we had created entirely the language we use to communicate, would it be better suited? Would we miscommunicate less? Did the brothers know that they would lose all nuance to the way they communicated? It occurs to me to say: “The brothers lived alone.” But they brothers lived together. But their shared, private language tempts me to say: “The brothers lived alone,” instead of “The brothers lived together without anyone else.” One statement is accurate, but both feel true. Limiting their ability to communicate with each other with the complexity and nuance they had already developed.

Thing is, I’m more confused now then I was when I started thinking about this. What does that say about the way I experience the world and use language to make sense of it? What does that say about wondering whether or not a condition which might limit my experience of the world and limit my ability to use language to make sense of the world is enough to make me end my life? Constrain my ability to be in the world how I am now in the world by taking away some of my perceptive organs—even the ones I currently value more than the others—and won’t I adapt a new way to be just as confused as ever?

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  1. Bobby Dixon

      amazing mathew

  2. Matthew Simmons

      Thanks, Bobby.

  3. S. C.

      This is my favorite article I’ve ever read on HTMLGIANT. Thanks for the links. There is a profundity here that reaches to the core of the human spirit.

  4. ownclmnts

      from many subtle channels by daniel levin becker, p.148:

      ‘in the world we live in, we are beholden to all manner of terrible constraints – mental, physical, societal – with death the only way out of the labyrinth. the least we can do is mark off a little section where we get to choose the constraints we are mastered by, where we decide which direction to take.’

  5. Benjamin Reed

      I enjoyed this. Not to disparage other writers here (they’re all pretty great), but the unadorned thoughtfulness and narrowness of focus here was refreshing.

  6. Matthew Simmons

      Thanks, S.C.

  7. Matthew Simmons

      Thank you, Benjamin.

      They are all pretty great, aren’t they? Mostly I just try to keep up.

  8. Matthew Simmons

      Thanks for sharing this.

  9. bemightee

      great as usual. but man how do you find the subjects for these obits? i’m curious if you know the obits in the back of the economist. they do an amazing job of summing up lives.

  10. mimi

      i saw this story as ‘trending now’ on the Yahoo! homepage hours before i saw it on htmlg

  11. bemightee

      looks like i’ve got to start paying closer attention to the yahoo homepage!

  12. mimi

      not really! i’m even slightly embarrassed to admit that i look at the Yahoo! homepage ha ha

      and to matthew simmons, a message: this is in no way meant to dis your thoughtful post – i was actually quite pleased to see the story at htmlg, thinking that it might stir up some interesting comments about disability & assisted suicide

  13. Matthew Simmons

      I usually find these by looking in the NY Times and the Guardian obits sections. I might have actually just seen a link to this while lazily scrolling down The Huffington Post, though.

      It was a while back and just stuck with me.

  14. Matthew Simmons

      No offense taken. As I said, I’m fairly certain I found this on the Huffington Post between crazy cat videos collections and celebrity news.

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