HENRIETTA BOLLINGER
ARTICULATIONS
Articulation
The act and process of forming a thought
We can make a pact. We can tell ourselves that this is the story of my world-view and how I formed it, how it is reforming, how I was formed by it. Hold on to that for now. It isn’t untrue. But coming out as a full sentence it seems maybe a little too definite, a little too sure of itself, a little too much like the only thing I mean. Maybe we can agree to call it a story: note the indefinite article, a single letter gently expanding the space around a thought and suggesting more than one possible story. Will that give me more space to breathe, more space to contradict myself? Maybe. That’s a little up to you and your interpretation.
The first story is always and inevitably about being a twin. Forming a being, forming a body. In utero there was so little between us that we were able to grab each other by the wrist, the story goes. She explained me simply by being within reach.
The stories about disability and birth always had their own twinship, if a more uncomfortable one. In that they were both facts I knew bodily, before I could talk about them. When I learned the words for my disability I also learned the name for the kind of twins we were, the kind of pregnancy we had been, the conditions of our formation.
Zwillingschwester, māhanga. In every language I have ever tried to learn, one of the first words I ask for is twin. In New Zealand Sign Language making this word involves holding up two fingers, almost like a peace sign but closer together and shaking them side to side: twin. All my fingers automatically want to stretch out at once, making the word unintelligible, more like I am about to grasp at the air in front of me than say anything important about myself. So, I ask for another one, which thankfully there is. I sign it twice so that my body will remember it.
She and I are mono-mono twins. We split late and were made of the same stuff and living in the same space without a membrane between us. Before I have the term itself I just know that we floated around in the same amniotic sac. Babies usually have their own little pool, Mum would tell us.
My sister used to categorise things in the world in pairs – by colour, size or type of object – and hold these twins she’d found up to our parents for their approbation: Same, she’d tell them. Same.
To make clear sound
Probably kept with our milk teeth, letters to fairies and other magical beings, and the list of names if we had been boys, our time, weight and date of birth. Our parents’ affectionate and incomplete records suggest that one of her first words was my name.
The same records suggest that it was one of my first words too. This idea embarrasses me. But can you have an ego before your memory develops? Or was I just repeating what I heard from her mouth?
We/ us/ ours. Same. Same. A gentle reflex, a gentle reflexive.
Although, or maybe because I moved less, I talked more than she did. That is the second story. I was and still am the family holder of names and dates and connections between people, it is my job to remember these things. I always laugh at my family for drawing blanks. I was proud of being depended on to fill the gaps. I felt useful.
I would also remember the names of diagnoses and operations, the dates they happened, words that were precociously long for my small tongue. Doctors would test my reflexes and I would jump. I would walk for doctors too and I could never really tell what they thought, but talking – I knew this impressed them. I was good like that, I told them things. I showed them my uneven gait, my spine, my hips and talked about them: extension, dysplasia, spasticity, tone, contractures. I can name and date my operations too: 8ᵗʰ of October 2001 was the first and was made up of at least two procedures. An adductor release and tendon transfer, whatever these actually mean. It is easy to remember because eighth and October match. I know that October used to be the eighth calendar month, like an octopus’ eight legs, until somebody called Julius added July and August after himself and his son. I didn’t know the words divine right, ego or patriarch then. I remembered July because that is my birthday month. I liked the pattern of it. It was easy to remember because it matched me too: I was eight. See, I can talk in the way you have taught me. A gentle reflex but also a way to say I know my body like you know it. Medical words were my second language.
Maybe I am reforming things too much to say that I was conscious of pushing back against the way that other people understood my body. Still, it hummed under the surface of conversations, appointments and exchanges with strangers. There was an ease with which I explained my body to anyone who asked: without asking myself what I wanted them to know, without much reflexivity, I handed over the whole story.
And I became a writer too.
Related term: Inarticulate
I am on my own in Germany and somebody says brusquely:
Ahm… Sie hat die Kinderlähmung/ Oh, she has polio.
Explaining me.
Nein, nein, das stimmt nicht/ No, no that’s not true.
Was für Behinderung haben Sie en?/ What disability do you have, then?
‘was anders. Ich weiß es nicht. Ich bin Zwilling’ und wir… ahm… mach’s nichts / Something else… I don’t know…I’m a twin and we… um… doesn’t matter.
I do know. But not here. This is just the body I brought with me. I don’t know how to talk about it. I don’t have the words and besides, she isn’t here, she isn’t in reach.
Related terms: Inexpressible and inextricable
At the meeting I am the only person without qualifications in disability studies. I am also, as far as I can tell, the only disabled person in my breakout group. The conversation turns to how to better support new parents when their child is first diagnosed disabled:
Connect them with disabled adults, I say simply.
The thing is, explains a PhD who has worked with disabled people for years, it is important not to overwhelm parents with discourse.
See? I can talk in the way you have taught me. This is my second language, you know.
What is medicine, exactly? I don’t remember if I ask this aloud or just ask myself and stay quiet.
I tell myself that as a child my impulse was to write about anything other than disability. This is mostly true. I remember being given a book written by a disabled teenager as encouragement to write. I didn’t understand. Disability was too every day, too ‘normal’ to be worthy of a story. Stories were for reverence and becoming lost in.
But to say I had no need to write about disability is wrong too. My first piece of disability writing was dictated to my grandmother – Nanny – so I don’t know if it was by her suggestion or not. It was about hospital. I was still eight. Specifically, it was a rage against the hospital breakfast menu, written like a child from a Sendak story. I remember the words I DON’T CARE were dutifully penned in my Nanny’s looping capitals.
Adults in my world were insistent on small questions about what I wanted, like a choice of breakfast cereal. Of course, they were trying to make a horrible situation better for everyone, comfort me, comfort themselves. The poem raged against the smallness of the choices on offer to me. I wanted more expansive ones, the choice to leave. If not that, then room to yell. This kind of anger is still quiet, close and familiar.
The movement of a joint
An alternative language of disability presents itself to me in university. The Social Model positions disability as a process that happens when a person comes into contact with a world that has been built without them in mind. The world, and not the body, is disabling. The body still exists in this understanding of the world but is less in need of fixing, it is less to blame. But I take on a binary understanding of this model, absolving my body, when I first learn that it is the world at fault and not me. I fall in love and I disappear into this theory, a relief, a reason to put my body aside. This is a daylight trick. At night I fall getting into bed, my legs fold painfully. I cannot stop them. I phone people for help but my entire social world seems to be asleep.
Something about crawling on your stomach down an apartment hallway, knocking on the doors of startled neighbours for help makes it all seem less of a construct. This is mostly due to the carpet burn. My neighbour puts his number into my phone for future reference. I am grateful for his strong arms and practical sense and then for sleep.
Redaction
a version of a text, such as a new edition or an abridged version.
The first play I ever wrote was a composite of all my teenaged disability rage, boiled down into a quarter-of-an-hour rant and given to two friends to do what they could with, and they did beautifully. I left – carried up the stairs and out onto an Auckland street – with the intention of expanding it. A decade later I still haven’t. This is mostly because I don’t know how to end it. I don’t want to leave the impression that we move in a direct line from anger to self-acceptance. It would also be wrong to say we that we reject our bodies. We find stories to tell about our bodies to explain them but there is no triumphant narrative arc. It is more daily and more circular than that, more mundane. Sometimes I will explain my body to you and sometimes I am tired, sometimes both.
the process of editing text for publication
Most disability memoirs I’ve read, even ones I have found earth-shattering, start with the story of diagnosis, or at least with an understanding of the narrator’s body/self as somehow deficient, and end with community and self-discovery – very neat and tidy and linear. I have toyed with leaving out any mention of diagnosis here. I want to avoid writing into tragic tropes that seem to crowd in on the medical view of disability, but somehow diagnosis asserts itself as required component. Even if I am writing to decentre it, it insists on being present in order to be shifted. And besides, the contours of these words are so familiar, I reach for them reflexively.
These days, if I am interviewed about my writing or advocacy I try not to give away my diagnosis. At the very least I give it to them late, after I’ve firmly established a person beyond the medical description. Even when I leave it out, it is already on the internet so journalists usually insert it. When I appear in a write-up about my Mum’s career, while my siblings are mentioned for what they do, I am mentioned for what I have. The editors refuse to edit the diagnosis out because it is not a factual inaccuracy.
When someone asks me again, What happened, what’s wrong with you? I test out a new tactic.
Nothing, I insist.
But what they are really asking hangs in the air between us. There is an expectation that I will explain myself. Sometimes I cave, sometimes I don’t.
Henrietta (Etta) Bollinger is a Pākehā writer for page and performance. They are based in Te Whanganui-a-Tara, Wellington. They have had poems published in Aotearoa and Australia and plays staged in Aotearoa, Australia and England. In 2022, alongside Nathan Mudge they co-edited the best practice guide Working Together: Accessibility in Aotearoa Theatre as part of Playmarket’s Guideline Series. They are proud to be part of the Starling flock. Their work appears in issues 3 & 4. They have also performed alongside other Starling contributors at VERB Wellington LitCrawl events. This latest contribution to Starling comes from their new book Articulations which will be published in September 2023 by Tender Press. They are grateful for the support of Creative New Zealand, The Copyright Licensing Trust and the mentorship of Pip Adam.