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Let’s talk bodies, self, and the ethical use of biotechnology. A thread on what a human is, the differences between individuals, and autonomy as the bedrock principle of the biotechnological age. 1/x
Here’s the previous discussion on science, legitimacy, and social capital if you missed it
I’m a molecular biologist. I work with the bits and pieces of biology that are shared by every single living thing on this planet - DNA, RNA, and protein. 3/x
That means I see the material stuff of living things and the lives they live as distinct from one another. They inform each other (more on that later) but they do so in the way a script informs a play or a language informs a poem. (4/x)
So first: You are not your body.
I’m writing this as a person who doesn’t have to think too much about the body I live in. It and I have had a pretty peaceful relationship - I don’t have to devote a lot of my waking hours to getting it through the day.
This is not the case for everyone. Some bodies are harder to live in than others. Some lives find themselves in a foreign body. Some bodies work really hard to kill the lives they carry. Some bodies need constant maintenance. Some, like mine, just roll along. (7/x)
None of these bodies are wrong. None are less human than another. None preclude living a full and human life. They wouldn’t that is, if we constructed a society that allowed them to live a full and human life. If we saw bodies with different needs as equally human.
As it is, we punish bodies that have additional needs. The lives carried by these bodies have to fight. for. everything. To get into a building. To get to a different floor in the building. To make a living. To have food to eat. To make use of technology.
Haven’t used the word yet, but often bodies with different priorities are called #disabled. I have not lived in one of those bodies, but the full & complete humans who do talk about it at #cripthevote or #abledsareweird. Follow them. Hear about their lives in their own words
(Not tagging anyone here since it's not my job to assign labels, but if you live in a body that needs some extra consideration and you're public about it, reply here & I'll retweet for visibility) 12/x
Second: You are more than this moment.
I use the phrase: “bodies that carry lives” because that what a body does. A body without a life is just meat. We humans exist not just in the three dimensions that surround us right now - we move second by second through a fourth dimension: time.
The life that your body carries is an integration of all the seconds before this one. As a result, you, the life your body carries, changes as the seconds pass. 14/x
Life, all life, is some finite period of being between two very long periods of non-being. This goes for you and for that “immortal” jellyfish and for the aspens that make up Pando 15/x
The body you started your life with, the body that began this journey through time, was very different from the one you occupy now. The body you die in will be different too. 16/x
Even though your body has changed dramatically, you remain yourself. You are defined not by your physical existence but by your path through time. You are defined by the life you live, not the biological material that carries that life 17/x
We know this on a simple level - if I cut my hair, I remain myself. If I amputate a limb, I am still me. If I lose a sense, I am still me. We resist this idea for other physical transformations, but it remains true. If I change my physical sex, for example, I am still me 18/x
To quote @GwenBenaway “Biology is the beginning, not the end of our story” 19/x
@GwenBenaway Third: The life living in the body, gets to define that body.
@GwenBenaway Thank you to @agtmadcat for asking the question earlier this week: How you feel about making better humans by removing defects?
@GwenBenaway @agtmadcat For humane, ethical use of biotechnology, step one is to examine the two very common assumptions in this question.
@GwenBenaway @agtmadcat First, consider the differences differences, not defects. Listen to the lives that live in these bodies. Look at the art they make. Learn to see these people as whole. (22/x)
@GwenBenaway @agtmadcat Poet Kaveh Akbar (currently not on Twitter) once shared work by DJ Savarese, a non-speaking person with #autism. Here’s the poetry collection, written by person who doesn’t speak, but who definitely uses words. djsavarese.com 23/x
@GwenBenaway @agtmadcat DJ Savarese has autism. It informs his work. This is not a defect. It is a difference. 24/x
Deaf Republic is an incredible collection of poems from @ilya_poet. He is deaf. It informs his poetry. This is not a defect. It is a difference 
@ilya_poet In season 12 of @ProjectRunway, @JLeBlancDesign #3Dprinted accessories that showed a unique perspective on sound. He is deaf. It informs his fashion. This is not a defect. It is a difference. 3ders.org/articles/20131…
@ilya_poet @ProjectRunway @JLeBlancDesign “Fixing” these differences does not “improve” anything. Coming from the outside and saying that I can “fix” these differences results in a loss in the breadth of human experience. It shrinks what it can mean to be human. 27/x
@ilya_poet @ProjectRunway @JLeBlancDesign Now, some bodies are very hard to live in. Some lives want particular bodies. If the people living in the body want to change it, I support that 100%. Go for it - it’s your body. You’ll still be you when you’re done. 28/x
@ilya_poet @ProjectRunway @JLeBlancDesign But the lives living in the body are the ONLY ones who can decide if that change is an improvement or not. 29/x
@ilya_poet @ProjectRunway @JLeBlancDesign Justin the designer is particularly interesting to me because he has a technology which allows him to hear. He chooses, for his own reasons, when to use that technology. Silence, to quote @ilya_poet, is an invention of the living. It is Justin’s native land. 30/x
@ilya_poet @ProjectRunway @JLeBlancDesign I have never lived in any body but my own. But I can listen to the lives that live in other bodies. I can take them at their word. I can see them not as misguided or poverty stricken, but as witness to their own existence. I do not have to impose my existence on to theirs. 31/x
@ilya_poet @ProjectRunway @JLeBlancDesign Our physical bodies change over time. We have little control over some aspects. They sprout hair and get taller regardless of what we may want. But we can shape other aspects. Train our voices, strengthen our muscles, grow soft in the comfort of our lives. 33/x
@ilya_poet @ProjectRunway @JLeBlancDesign We often pay less attention to our mental selves than our physical selves. Here too, there are aspects which we cannot control and aspects which we can shape. 34/x
@ilya_poet @ProjectRunway @JLeBlancDesign The tools to shape our mental selves have existed as long as we have: art, philosophy, writing, community, the experience of living our lives, self-reflection. Engaging these tools, not tinkering with basepairs, is how we become fully human. This is where 'better' starts. 35/x
@ilya_poet @ProjectRunway @JLeBlancDesign Your humanity doesn’t live in your DNA or your physical self. Becoming fully human is an interior exploration that every person has to undertake for themselves. Genetic engineering cannot bestow an innate understanding of what it means to be human. 36/x
@ilya_poet @ProjectRunway @JLeBlancDesign This is a long thread, but two exhortations for my fellow biotechnologists: Remember that there is no such thing as natural order - your work builds different things, not better ones. And, please, explore your interior selves with the same diligence you use to explore the world
@ilya_poet @ProjectRunway @JLeBlancDesign The takeaways, because really, this thread is super long. 1) You are more than your body. 2) You are more than this moment. 3) You are witness to yourself. 4) The embodied human experience is vast. Let the lives living in those bodies choose how they want to change them.
@ilya_poet @ProjectRunway @JLeBlancDesign End thread. Please come with your questions and your thoughts - correct me where I'm wrong, too. This is my understanding of my field and where it needs to head, all feedback is welcome. The time for this conversation is now.
