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.
Here we can see evidence of two central themes: The urge to integrate into normalcy, and the urge to indulge the senses. Heather’s writing is punctuated by efficacy. She seldom supplies a problem without a solution – or a negotiated resolution. Alienation or aloneness is thematically redirected onto the environment to the point we couldn’t distinguish internal from external.
Walk for Autism Speech
The importance of providing context in the life of people with autism can not be overstated.
Context eases our confusion.
Context offers us control to our internal world and a home for external stimuli.
Context gives us the — “you are here” — arrow in the big, bad neuro-typical world.
(Heather, again, draws a distinction between “worlds”.)
The three primary categories of disruption that severely impact our (autistic) world: These include – Social interaction, Emotional stimulation, and Sensory stimulation.
I talked about how confusion creates a perceived threat, which hampers higher brain functioning and leads to adverse behavior.
I gave some examples of how life situations created confusion in my world.
I explained that self-stimming is a sensory input management tool that helps to ground the autistic person, calm the brain and is used to “drown out” externally impinging stimuli. Know that self-stimming is neither a bad behavior nor inappropriate for the autistic child.
And I talked about the importance of how having context can alleviate confusion and the sense of threat.
Now I would like to leave you with some Suggestions:
Recognize that your child’s adverse behavior is probably the result of confusion.
Recognize that alterations to your child’s external environment cause confusion.
Recognize that alterations to your child’s internal environment cause confusion.
I like to think that Autism is a central topic and cause for Heather because, beyond being Autistic, it provides a table on which to negotiate an individualised sense of normalcy. She begins by describing confusion: A recurring theme, and in keeping with the idea of attempting to merge worlds. Words for many of the daily physical tedium Heather carries out simply don’t exist. As I said previously, self-efficacy marks the conclusions. We can resolve the conclusions and suffering that disability cause through three forms of normalisation: that of ones self, that of ones external and internal environments. This notion of the break between environments is recurring as well and is the second “primary” theme. Heather states that her primary place of “self unification” is through the abandonment of the social self in favour of a total merger with the sensuality of nature. The next poem is relevant to this theme as well.
Poetry Entry: Swimming
Swimming has always been a special and strange activity to me. Within the isolation of my hearing impaired experience, I seek the wonderment and fascination of the properties and behavior of water and my interactions with it. There is always the ritual of gradually stepping into the welcoming silence of a swimming pool. I must test the temperature and become tolerant to it. Then as I sink slowly into the water, while mildly floating upwards, I delight in the water’s comforting embrace, allowing me to spread out and relax while being massaged by the gentle waves lightly brushing against my body. After the initial adjustment and relaxation in the water, I go to work testing the buoyancy of my body.
As I get older, I experiment with summersaults in the water, discovering how to avoid dizziness while maintaining my directional focus of which way was up. Not being able to interact with other people in the pool, I create my own scientific experiments and physical challenges to test my body against the water, while enjoying the ecstasy of freedom from gravity’s heavy pull. Choosing one of my favorite games, I see how closely I can swim down to the bottom and how long I can lie there and move along the bottom with my hands before having to swim back up. After a pause, I begin pushing against the surface of the water with my arm and hand as I spin around in place, creating large waves of water jutting up and outward. The repetitive creation of waves calms me and excites me at the same time, while also creating the only sound I can hear.
The large, yet quiet, sound and visual movement of the wave lures me into a hypnotic focus on the blending of me into water. Without the sounds of voices, all of my communication with people is by gesture and lip reading. Switching from the cue of sounds, my vision and touch become an artful guide to the interpretation of my environment. The detailed gestures in the pool are beautiful, like a choreographed dance of ideas and emotions etching into the gentle motions of the water and the stillness of silence.
I love this poem, and Heather agrees with me that it is the most salient to her outlook. She manages to explain her “contextual joy” without resorting to narrative discourse.
This poem describes Heather’s experience entering into a physical realm of total isolation in which she switches off from what could be considered a “normal” focus on those around her, to one in which she notices not only the movements and actions of others (rather than their language). Rather than spending cognitive energy immersed in the meaning of words (when her ear piece switches off, normal language disappears), the focus (as in recess) turns to one in which the entire environment she is in is (the water, the senses perceiving it) slowly merges with her. The experience takes on the form of a relationship of its own – engaging and absorbing as any normal human conversation. In Buddhism this state of awareness is often thought of/called “merging with what is”. It is considered a high accomplishment. The dissolution of the subject an the object into one state of awareness through sensual regard.
Poem: Inner Light
I contrast the feelings inside me to the details of the environment around me and the energy of life outside of me. The pencil, sun beams, ceiling panels, traffic noise, clouds, stars, the beam down the center of this ceiling, arrangement of chairs, space between objects…
I see how the details fit together to create different kinds of Patterns. Within the multiple patterns.. I gain multiple perspectives. Multiple perspectives create space.
In the space.. I sense the essence of every detail’s existence. Taken together, there is so much more around me that my challenge pales in comparison. These perspectives bring beauty. Beauty brings joy, joy brings love.
I choose to look beyond the discordance in life, to find what resonates with my vibrational being. This energy is who I am. I always know who I am. I know I’m bigger than my challenges. This knowing helps lift me up when I am struggling.
My perceptions and perspectives along with my actions are guided by this energy radiating within me. When everything inside me and everything in my environment… Food.. clothes.. sounds.. and sights resonate together to a perfect pitch.. this is the unity I am… This is me.
Michael: A good example of the third theme, the more ephemeral of the three. The focus on moving in between and back and forth across the exercise of creating and then destroying context is overcome by a compulsion for aesthetic, total appreciation. This aesthetic appreciation peaks in the appreciation of the complexity and intrinsic beauty of life itself – a cat, a bird, a person.
By Michael Todd & Heather Madsen
About Heather and Michael
Heather Madsen, who was born with Miller Syndrome, and I, decided to produce something that could fit into the field of narrative research or perhaps a narrative autobiography. Heather’s expertise is in writing on the subject of disability first hand; through poetry, essay and public address. My expertise is as a clinical psychotherapist, and as a researcher. My previous research focused on extracting coded language from teachers to test whether new curriculums really replaced old ones, or whether the new ones really just reiterated semantic heuristics (same old, same old). I used MAXQDA for that project.
Miller syndrome is rare (in the sense Miller Syndrome has 30 representatives in the world), however, there are many related cranial-facial disorders. She goes across the country speaking, commiserating and helping to form a community of similarly disabled people. These trips might seem of average length to us, but they are big endurance tests for her – it’s difficult for Heather to breathe because of the genetic esophageal condition accompanying Miller.
Heather and I both have degrees in Psychology. I’ve been working as a clinical psychotherapist now for 10 years. I took a break from it and worked in a large disability facility for the CPA (Cerebral Palsy Alliance), got my Cert IV. Now I divide my time between pursuing my second MA and a Phd and working for a suicide crisis organisation. Heather spends her time writing poetry, speaking in public, appearing across the country (the U.S) and acting as an advocate as her health permits.
Heather’s mom and brother have both been published. Heather’s mom, Debbie, wrote a stirring autobiography about her experience giving birth to Heather and her brother in “8 fingers and 8 toes.” When Debbie consulted the geneticist regarding whether her second child would have Miller, the response was that the chance was statistically insignificant. Her second child with Miller is named Logan, and he is an artist; he’s also starred in a film about himself.
A mixed modality approach seems obvious for this project. A research proposal has been produced, but it’s primordial. The final product of this first effort should create two products: The beginnings of a text-based content analysis (for future use with other disabled persons in narrative settings), but more importantly, the framing of a research product focusing on Heather herself. I don’t speak on behalf of Heather, but we’ve agreed she best expresses her experience through non-expository forms (poetry, some essay, spiritual ideology, etc.)
Finally, a few concrete ideas have begun to emerge. We agree that Heather’s experience is best thought of as a combination of Functionalism and Spiritualism (as bizarre as that sounds!). As Heather’s body has, as best it can, adapted itself to the necessities of 21st century life, we have gained insight into how exactly to represent its uniqueness.