My friend Lindsay is a lawyer, and when I posted about following the Senate hearings she responded with solidarity. “I know the toll these proceedings can take.” I texted her a selfie with my breasts, bare and drenched in rainbows. “This is how you attend hearings, too, right?”
I told her that I envied those who could compartmentalize in situations like this. Not because my feelings were heightened, but because the complexity of ideas and arguments was a lot to manage. Each person starting from a different premise, even when you can stack and group conclusions together. The subtlety, the overlapping but opposing points, and dear fucking god, maintaining a clear position is a unique kind of …..
I struggled to find the word for how it felt.. intimidating? I sent more selfies of my boobs, “Me commencing deliberations” was my caption, my nipples reaching for sun like leaves.
“I’m thinking the word is less intimidating and more assimilate. Taking in all these conflicting yet congruent concepts in a manner that the brain can process.” she answered, “your deliberations are much more sexy than court allows. Rule breaking at deliberations is so on brand, I can’t believe I didn’t forsee it."
“I assimilate best with my boobs in the sun.” I replied.
Of course, I could break the rules because no one could see me. The paradox of highly visible disability making one’s humanity invisible has taken on a new layer as the invisibility the pandemic has shrouded everyone in has given me a chance to rest, to choose who sees me, how and when.
The disabled life operates in this paradox: We exist due to medical advancement and intervention, and medicine advances as a result of our need for it’s intervention. Necessity is the mother of invention, and disability is the mother of necessity. As a result of the continued existence of disability and disabling conditions, the health of the population advances, but disabled lives —once no longer curable— cease to hold value.
Disabled lives do not belong to medicine, they belong to us who live them. But society and the medical community continue to think of us, not only solely in medical terms, but also as the property of the medical community. Many of us are not ever given the choice to live life on our own terms. The personal qualities of a human life are overtaken and shaped to suit the convenience of the medical environment.
We are selfish for wanting to carry on living them, considering all the help we need to do so. How do you hold your own life in esteem when you are explicitly told it is not valued by those you depend on to preserve it?
As a complete coincidence, I’ve been unwinding after these long days by re-watching episodes of Star Trek Voyager. I grew up in a Trekkie family, the theme song makes me feel good. I already know the story lines so I don’t have to ‘assimilate' anything.
Last night I watched “Emanations.” The episode in season one where the crew thinks they’ve discovered a new element, one that could power their systems, a fuel they desperately need on their impossible journey home. Only they discover the ‘element’ is actually an emanation pouring off the decomposing corpses of an alien race.
During their exploration of the burial ground, Ensign Harry Kim gets caught up in the beam that deposits the bodies and disappears. He materializes inside a kind of ‘death pod,’ banging on the walls to the shock of the aliens gathered at a funeral.
The aliens believe that when they die, they are sent— in physical form — to live in a new dimension with those who ‘died’ before them. So they believe Harry has come from that dimension. He would be able to report on their loved ones, on the experience of the after-life. All Harry has seen, however, are their bodies, wrapped in shrouds, emitting some kind of energy, but certainly dead.
An alien preparing for his death overhears the Thanatologist (literally, a death expert) questioning Harry and corners Harry with questions of his own.
It is revealed, on this planet they are euthanized. "After my accident,” the alien says, the brace he wears around his hip and leg displayed over his clothes so we know — he is disabled. “I became a burden to them." His family had a meeting and decided it was time. The acceptance of this assisted death rests on the assurance from thanatologists that the afterlife in tangible form exists. This is not faith, but facts. So what then does an assisted death mean when there is doubt?
"We don't know what happens after we die." Harry confesses as they talk.
"Don't your people have thanatologists?" the alien asks.
Harry tells him that we have scientists and philosophers and religious leaders who have many theories and teachings about death, but none of them really know.
When Harry finds the alien wrapping his own body in a ceremonial shroud and shudders, the alien shrugs and says, "We look forward to it.” But also, he expresses his reservations, an unreadiness to die, that he felt before Harry showed up with stories of bodies and no afterlife.
They decide to stage a switch. The pods they lay in at their appointed death are also transports, and one could send Harry back to the place where his ship is waiting for him. Harry, wrapped in the ceremonial shroud, takes the place of the alien scheduled for death who, instead, disappears into the hills to live out his natural life.
The show does not take a clear position on this society’s practice. Harry is horrified, but tries valiantly not to judge. He is frustrated that the people want answers from him that he cannot give and do not want the answers he can. The alien is a mix of accepting and hesitant. He resonates with his culture’s practice in the general sense, but does not want to die. The scenes of his wife telling him how proud they are of him and crying at this funeral are sharply contrasted with knowing she also pressured him into it and, while this may be genuinely sad for her, it is also mainly designed for her relief. If he is selfish in wanting to live, what does that make her in nudging him to his death? Though the philosophical point does linger: the desire to live for those who have been deemed burdens, becomes more and more ridiculous, untenable, and supported the more the idea of a ‘noble’ death is normalized. To live is to go against the grain, and who gets to decide whether or not you are a burden is everyone but you.
When Harry makes it back to the ship, he assures Captain Janeway that he’ll be ready to work the next day but she urges him to take more time. Not because he isn’t capable of working, but because we take so little time to process the extraordinary experiences of our lives. That over time, we become cynical and hardened to them. That whatever he just experienced counted as something extraordinary and it deserved his attention. Not for the sake of conclusions, but just.. the dwelling on it for it’s own sake.
Harry expresses sadness that the afterlife they believe in is just a big lie.
“I wouldn’t be so sure,” Janeway says, and tells him that they discovered complex signatures in the emanations. Beyond what they would expect simply from that energy form. Something much more dynamic was happening. The episode ends, as the show often did, with the mystery as fuel for hope. With the point being to leave room for the unresolved.
I saw my earlier envy of the ability to compartmentalize another way -- as a moment of wishing the reflection away. This senate debate is an extraordinary experience. Not in the sense of 'good' or 'positive' but in the sense that a reckoning is occurring on a vast scale and each of us are the source of the emanations, the dynamic activity, the mystery of what that means unresolved.
Lindsay's words, “conflicting yet congruent" took a bit of clang out of the ringing in my ears, but the vertigo of ableism is still there.
“It’s the dichotomy of most legal proceedings. Even when I’m right, I understand the other side. I mean, I’m gonna win. But it’s a balance of perspectives.”
I’m not a lawyer, I’m not part of the proceedings, and I’m not sure we’re going to win. I don’t know what a balance of perspectives in this case would even feel like. Those who support the bill lean almost exclusively on legal precedent and precept and abstract versions of autonomy and choice. Those who oppose cite human rights violations, the ongoing abuse and neglect and discrimination of the disabled community who lack autonomy in concrete ways. They called us by name in this legislation --the disabled-- then dismissed us when we responded.
The word grapple, to wrestle with, is related to the word grapnel, an anchor. I looked it up because I wanted to described this feeling as winged, like a fluttering and a power struggle combined. I learned that grappling can also refer to seizing hold of someone or something. To grip it. To both have a hold and to be scrambling for hold. The word is already winged.
"I have always loved the references in Homer of being on winged feet. And perhaps that's it. Needing to find the lift, that power to move forward and advocate while processing the extraordinary," Lindsay says as I grapple in text.
Emanation, in the dictionary means "an abstract but perceptible thing that issues or originates from a source." It is also used in chemistry, spiritual beliefs and physics. In the biblical sense, it means to rise. As in the Holy spirit.
What emanates from the debate is the spirit of eugenics. Us, defending our lives against their 'progressive' instincts to end them. The votes roll in and we lose and we lose and we lose.
Will we also rise?
“The weight love. Holy.” She replies.