A short insight into a future publication …
The following represents a 1st or 2nd draft with elements removed of a paper that will be presented for publication in due time. It’s of particular interest to those of you interested in disability writing, autobiographies, ethnographic research, poetry and psychology.
NI – Narrative Interviewing is a new method of research. It’s useful, particularly when dealing with very small populations (including 1 person).
NI, in many ways, is story telling – the art of autobiography. Eliciting a life story, an experience, a phenomenological event – these are complex and difficult problems. They incorporate language, linguistics, anthropology, psychology, etc.
Here is a short, abridged version of my work with Heather M. (one of 30 individuals in the world born with the genetic condition known as Miller Syndrome.
This work examines the notion that multi-modal research techniques, along with Organic and Naturalistic methodologies, can be applied to individuals even where no disabling communication or intellectual disorder exists. No central Narrative is assumed, and readers are given free reign to look collectively on several different types of offerings: poetry, speech, essay and interview. No exposition is assumed; the boundaries that exist are those between researchers, interviewer and interviewee, and the internal reflections of the participant. The notion of a “coherent and highly structured story” is eschewed – the story takes on whatever form the reader desires. The events of the participant’s life, in each mode, are on display for symbolic interpretation. Similarities and contrasts exist between this work and that of (1000 voices). The ontological field is intended to be as broad as possible; stories can emerge from disability, disability content from non-disability narratives, and so on. In this way, a disability narrative with high plasticity and minimal pre-conception may emerge. (Appendix):( Given Heather’s extensive network of individuals who possess cranial-facial disabilities, an independent design – larger platform version could be envisioned in the future.)
Talking about Death and Uncertainty and Disability: …
Perhaps we could put forward that the ultimate taboo in the Western World is death. Not all that much more needs to be said; raging is taboo, becoming sick is taboo – could we say that disability embodies death and ageing at once?
Regardless, one thing has always struck me about Heather. She’s never known how long she has to live. No Doctor she has ever meant does. She states she’s fine with this. Over the periods when I lost contact with her, my first thought was always … “has she died?” – as if it were a sin. She’s only 38, still has no clue about how long she’ll live. This uncertainty informs her view. She wanted me to read this poem to encapsulate those ideas (I added a quote). – Michael
HM – Inner Light
“I am absolutely not afraid of dying. I knew from a very young age that I might have a short life. So my mission has been to do everything I want to do, that I can do, in the event that I die the next day or next week or next month, and so on. In living that way, I know I am enjoying life and am ready to die when the time comes.” -HM
Nothing would sleep in that cellar, dank as a ditch,
Bulbs broke out of boxes hunting for chinks in the dark,
Shoots dangled and drooped,
Lolling obscenely from mildewed crates,
Hung down long yellow evil necks, like tropical snakes.
And what a congress of stinks!–
Roots ripe as old bait,
Pulpy stems, rank, silo-rich,
Leaf-mold, manure, lime, piled against slippery planks.
Nothing would give up life:
Even the dirt kept breathing a small breath.
“There are so many things I can’t do like others that other people take for granted, I don’t even know where to start. I think there is hardly anything I do that is the same as others. I don’t even sleep normally. Other things:
Holding your phone in one hand and typing. That is impossible for me. I can’t even hold the phone with two hands and type without resting the phone on something.
No walking or standing and texting for me, except for two word answers if I am standing.
Grabbing a glass and taking a drink is impossible. It’s a complex set of manoeuvres for me… every single time. Think how many times we take a drink a day.
I have to pet an animal with the back of my hand.
– Heather and Michael Interviews
Michael: Let’s hear you describe another third party sort of experience.
One day I was at the store, working hard to put a huge celery stock into the flimsy plastic bag.. its very hard to do because my tiny hands cannot grip the celery stock.. so I am juggling the plastic bag and the celery stock…
When the celery was in the bag.. a woman, who was standing nearby watching me, came over and said.. wow, I had no idea you could do that so well! (I forget the exact words).
I was shocked that 1, she was actually watching me 2, that she didn’t come over 3, that in her watching me do this, she learned something 4, that I affected somebody so dramatically by doing something so ordinary as putting celery in a bag.
On one hand, I was glad I didn’t ask for help… on the other hand, celery is a bitch and I love help!
Michael: I had the same reaction; I was very surprised at how your brain coordinated your unique body parts so well (i think it’s because they are from birth)
Heather: Sometimes kids stop what they are doing and begin staring… sometimes they look puzzled. Yes and Logan also.
Michael: why do you think they’re puzzled (kind of obvious and dumb question)
Heather: because they don’t understand what they are seeing.. they don’t have a context for what they see.
Michael: they have never seen a body like yours
Heather: they might be asking themselves, subconsciously.. is that person safe to be around?
Michael: oh? you mean you’re so different you might be dangerous?
Heather: I imagine that little kids might have that thought. Kids do run away scared, sometimes.
When I decided to get back in contact with my friend Heather, my next thought was certainly, ”is she still alive?”. Since her birth, Heather Madsen has had no baseline or human certainty about how long she would live. Total uncertainty on this issue, death, was the referendum amongst a collaboration of experts far and wide. To be honest, the thought that Heather (only 38 and seemingly fine) could be dead was one of the reasons I looked her up.
Uncertainty and death are cliché prose; they don’t fully appreciate how this lack of instinctual bedrock we all possess serve to educate Heather’s perspective and self-narrative. Her writing and speaking, interviews and conversations do that without exposition.
On deliberation, it’s occurred to me that my friend Heather lives in a world of blurred boundaries.
“We are not our bodies, personalities or our lives. Our lives are merely an expression of who we think we are. When we see beyond these appearances we are incapable… incapable… of not loving ourselves, everyone, and every thing.” – HM
HM – Interview
Boundaries are blurred between elements of herself; between herself and her environment, between herself and those around her … boundaries are blurred within the very construct of her subconscious, from my perspective. This isn’t pejorative; my conclusion is simply that I have come to understand that to know Heather is to understand the paradox of extreme abstraction in interaction with reality (at least compared to my own), and extreme literalness in her constant struggle to deal with Autism, and to integrate the singular autonomy of these individual constructs in a world that demands rigid integration of both social vision, mind and body.
Now that the reality of where I am and what I am most interested in studying lies before me, I began thinking more and more of my friend Heather Madsen. For whatever reason, I never thought of Heather as disabled. She was my friend, not a disabled person. I’d known her for decades. The reality became more and more obvious though – not only did she fit the medical model of disability, she personified it. Every aspect of her life, on a weekly basis, has been an experience in conjunction with surgeons, doctors, on lookers, stares and whispers.
Now was a good time to begin speaking to Heather again, but this time for my pointed reasons. I had been introduced to the notion of Narrative Research, and I found it would be mutually beneficial for us to do an exercise in it together. It’s not been that simple, though.
I was taught long ago that people only want to read a certain type of writing. They want writing that works as a story; that’s universally understandable and that they can relate to.
Whenever I would look to understand a situation; to learn something new or to edge myself into the perspective of the role of mediator or teacher, I’d think of the psychologist David Kolb and his learning styles/construct. In short, it has four steps: 1. A person sees or encounters something they haven’t seen before (think about it, at some point we saw a CUP for the first time!) we look for the closest thing in our memory to that specific thing and we relate it (maybe the closest thing we’ve seen to a cup is a hole?). 2. We reflect on the thing. How is this thing new and novel? 3. We form a new category … it can be a brand new abstraction, or a pre-existing abstraction based on prejudice perhaps. 4. We take our new category/concept into the real world.
What do you do when the “concept” you’re working with only vaguely touches upon the outermost lines of previous abstractions?
One good way to do this, I’ve found, is through interview and narrative research. Surely the fact that Heather can respond to all of my questions will make understanding her easy? It didn’t. The more questions I asked of her, the more she bounced away from the definition like a quantum particle. She resisted every attempt to be defined, even by the “special” words I’d learned in disability courses.
I decided that to be able to produce something for a third party audience, I’d have to find a transitional medium between Heather’s experience and reality. She was simply not interviewable in the formal sense.
Heather is a poet, though, and she happens to have lots of content. That poetry happened to be clearly explaining to me what I needed to know. I’d read these poems before, but it took me a long time to accept that they were, in fact, her answers to my questions.
We finally decided there was a mutually agreeable theme for this little project. It came down to water. It turns out, water is a living entity … and it turns out, that Heather communicates with it. Her lucid descriptions of stepping into water weren’t pointless abstractions; they were pointed illustrations of her perspective on life. To her, water is as real as you or I am. It’s a partner; it’s sensual – it moves with her and it touches her and revels with her and soothes her like a partner. Water isn’t inanimate it turns out – it’s as personable as you or I – and she likes to speak with it.
It’s not limited to that. Heather has developed the ability to focus intensely on every intimate detail of the inanimate world around her. She’s always had a profound and almost uncanny (8 fingers 8 toes) ability to merge with “non human” entities like objects or animals. She has many autistic qualities, and has been diagnosed as autistic (I have my reservations about it, though). As a schoolchild, rather than being consumed with worry about her relationship to the human beings around her (who seemed to mutually agree was best left alone) she simply spent her alone time communing with her environment.
Relationships exist everywhere it turns out, even between out feet and the gravel that churns around them as we move. The sun acts as another actor in this group (see Recess)
From this extremely unique perspective – one which we instinctually take as poetic and not as real as our own human conversations (to her these relationships are interchangeable), she delves into perspectives which are probably best left untouched on my part. They’re best seen as mystical, religious, silently unknowable or what not. Wittgenstein said, “What we can’t speak of clearly is best passed over.” What’s language without two people? From my world, it’s best passed over to Heather’s explanations.
Three Basic Themes: Boundaries, Relationship with Nature, Spirituality
I’d like to preface Heather’s work by stating that we’ve agreed on three explicit themes/words that best describe her phenomenological experience. The first them is that of boundaries. Defining the ever-changing (and perhaps immutable) boundaries between internal and external stimuli frames her writing well. Object Relations Theory stipulates that we create a directing object as a resolution to an internal failure to adapt (externalising anxiety). Oddly enough, Heather’s work seems to be avoiding the externalisation of direct objects. Instead, she castes aside motivations and seeks to realise objects for their own sake – the internal and external are the same. Coincidentally, this is the heart of the spiritual knowledge of the Tao Te Ching, a favourite work of hers.
Related Poetry Excerpts: Walk for Autism, Zipper that Connects My Ideals
The second theme doesn’t live in a vacuum from the first, but it’s still there. This would be, Heather’s learned relationship with nature itself. In periods of prolonged alienation, Heather would begin highly focused sorts of attentive relationships with the inanimate world. Most things we take for granted, she could immerse herself in – and do so almost in the same way we are programmed to “socialise”. As her mother mentions, this trait was apparent from the earliest stages. This takes the final form of sensuality; the language used is sensory and the relationship is now a merger with the atmosphere rather than a deterioration of it.
Related Excerpts: Swimming, Recess
Finally, Heather is profoundly focused on spirituality. This is an area I fail to fully conceptualise yet as an outsider to her inner world, but the insinuation is that it resolves the previous two themes in a transcendent way; beyond words. There is an appreciation for life itself that this spirituality manifests, bringing the previous two psychological states to their “actualised” form. NI deserves to grow in terms of its inclusion of spiritual Narrative.