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Marginalia (part 5/12)

6/17/2022

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socioplasticity. (singular. noun.) the capacity of a group or society to form and reorganize positive social connections, capacities, and mutual aid, especially in response to new situations, as a mechanism of community learning, or following injury to the group or any of its members
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[image description: A smiling heart looks at text that reads, "What images does the word socioplasticity evoke for you?"]

~ Anna ~

My mother’s story is love. An inclusive, non-grasping love. As her daughter, I have met her in this pedagogy of love a million times.

It is a pedagogy too often foreign to mainstream Western parenting theory, which is overrun with advice on compliance and success. My mother’s parenting theory? More love. Her life’s theory? Also love. Love defined further as the kind of nurturing love that frees the beloved, that does not cage. With her life partner, BJ, she calls this “growth for both.”


And in this field of love that my mother has cultivated throughout her life, she and I meet and learn from and teach each other — together.

We co-live.
​

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[image description: Anna kissing Karen's cheek as Karen looks at the camera; at Karen and BJ's home in St. Louis c. 2019]

But we also co-survive and co-thrive. We organize and reorganize our interpersonal lives — literally what we do from day to day — through challenge and triumph, heartbreak and awe, in dialogue with each other about what we both need, communicating openly and in new ways about those needs, about reciprocity and love and connection, about our mutual health and happiness. We are evidence of socioplasticity at work.

What in the world is socioplasticity? 

Socioplasticity is basically what it sounds like — it’s the plastic or malleable nature of societies at the macro level and all the way down to the micro level. It’s the changeability of any social relationship, community, or group of people. It's the ability of people who are co-living to be resilient together, to heal social harms and to flourish at the local level and globally. 

In neuroscience, neuroplasticity is the ability of the brain to send information in new ways across the synaptic gap from one neuron to another neuron that has never made that particular synaptic leap before. Developing novel neural pathways is a critical element of learning, along with repetition of these new connections. 

Similarly, people can invent new relationships and foster new depth and breadth in relationships and social networks across what Louis Cozolino calls the social synapse — person to person or brain to brain. And as information jumps from person to person in both familiar and surprising ways, over time we live out old wisdoms and simultaneously we teach ourselves new ways of being together. 

Because Karen and I both understand her life story to be part of collective change, we therefore purposefully pose questions to the reader throughout the telling to support active, aware, and positive socioplasticity. This story in turn will have many different versions, as many versions as there are readers. And that’s how we think it should be. You are a critical part of how Karen’s story can help create positive change.

Arguably, socioplasticity as such is also just science jargon for what human rights organizers call social change. As we see it, socioplasticity is baked into being human, to being the social creatures that we are, but may often be automatic or unconscious, and too often a status quo reproduction of violent and damaging ways of being together. 

But being in open connection and care with each other is possible if we can practice staying open and curious. In turn, we can bring more awareness and widespread positive outcomes to our socioplasticity by instilling in our social mapping and wiring and rewiring, both within our close-in circles and in our wider world, curiosity about self and other. And we can do that by asking more questions. And listening more deeply.

We can steer our social learning toward collective care.


Socioplasticity is therefore also a powerful tool for or means to social change. It offers a framework for influencing change in a particular direction through the cultivation of healthy, loving, mutually beneficial relationships. 

Socioplasticity is also a critical aspect of being with intersectionality and intersectional social identities. We have to stop putting people in rigid boxes or categories and start listening to people’s truly lived and unique ways of being in the world. To do so, being curious with each other is critical. If intersectionality describes the particular experience of a set of intersecting social identities, socioplastisticity is a framework for moving intersectional experiences from siloed, intrapersonal expressions and separate spaces to collaborative, interpersonal conversations and shared spaces. 

In modern life for a variety of reasons, we often put only parts of ourselves on display for each other. We utilize code switching or rely on cultural translations to keep us safe from oppressive systems, and even from each other. But there can be a cost we pay when we do this, and that cost is directly related to our own health and happiness. So we find our ways to show ourselves — our full selves — to someone, somewhere, a friend, a therapist, a stranger, if just for a moment, or for more than a moment; we find ways to let our deepest parts connect with others. Because that is what people do.

According to Barbara Fredrickson, love is more than a value or ethic, it is also a biological process and is actually quite conditional. It’s just that the conditions aren’t a thin waist and a fancy car. The conditions are safety, proximity, and physiological synchrony, like eye contact and breathing together, touch, dance, holding hands. In other words, love — wiring human-to-human connection — is the byproduct or experience of socioplasticity at work.

But in an oppressive world, when we hide part of ourselves as a protective response to oppression, we distance ourselves from each other. Literally, we create distance, segregation, gated neighborhoods, walls. This can feed into the recreation of even more fixed oppressive systems of separation, marriage inequality, prisons, deportation, caste. In creating all this distance we stop asking each other questions. And when we stop asking each other questions, we create more distance. We stop looking each other in the eye, stop sorting out time and space together, killing off our capacity for empathy. Ultimately we cut ourselves off from places and relationships for growing love and we weaken and starve our chances at incubating positive global impact. 

There is, of course, nothing wrong with also relying on protection and self-protection as we need, as we find ways to connect. In many ways, protection is connection. 

Using our boundaries and good judgment to find opportunities to show more of ourselves to each other in ways that actually work for us is vital. And yet through the practice of coming out to each other, mindfully, heartfully, and soulfully, at our right pace, we can change society and culture by rewiring the planet for love. 

We can be in curiosity with each other, asking each other questions and really making an effort to more fully hear the unique and full answers we each bring.

While we are excited to bring forward more inquisitiveness, questions, and complexity, we know that Karen’s story and our storytelling can at times get focused on single issues, dragging us inexorably back toward the center of the page where things are more black and white, less gray and imaginative and intersectional and uniquely human. We know that at times we struggle to hold a flexible approach to making meaning out of the details, to letting Karen’s whole story and her whole self be present, to letting the wholeness of the reader engage with Karen’s whole world. At times, we clench, shield, push away, becoming incurious even with ourselves. 

Like many or maybe most, shame and hiding are deeply trained in both of us. But where we can, our aim is to disrupt this pattern of hiding parts of our humanity. Our aim is to co-learn in a field of intersecting identities, love, and connection, within ourselves, with each other, and with you. In this way, the questions, the shared meaning-making, and the socioplasticity of this story are also a stand for intersectional lenses and learning.
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[image description: A heart with a quizzical facial expression looks toward questions that read, "Do you feel connected to people in this story? If so, how? If not, why do you think that is?"]

~ Karen ~

What exactly is the experience of a white disabled immigrant? Do we know, Anna?
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[image description: Text reads, "What's the first thing you recall learning about disability identity?"]

~ Anna ~

One Thursday on the phone, I’m talking to my mother more casually. I’m in some kind of mood.

What I like about your story is that it is and it isn’t a polio memoir. It is, but it’s more than that, too. You’ve done so much around being gay and an Obama supporter and a disabled immigrant. You’ve attacked life at a lot of levels, simultaneously. You’ve had to. Your being in multiple ways and cultures in the world made it a point of survival for you. I listened to a podcast yesterday that I appreciated a lot, though I still have arguments with. It was about emotions and it was on the Ezra Klein show, an interview with Lisa Feldman Barrett who wrote How Emotions Are Made: The Secret Life of the Brain. Barrett really argues against the assumption of loss and grief as natural, and how these processes are also cultural and not particularly or always freeing for people. Like my professor at the University of Chicago demanding that disability is loss. Period. Nothing else. Blech. You have known this for so long, that disability is cultural. You managed to have that thought so long ago compared to many people, knowing that your experience as a disabled immigrant in the 1970s was unique. This memoir on Amazon that I found called Twin Voices: A Memoir of Polio, the Forgotten Killer is so gross to me just from looking at it briefly. Maybe I’m too judgmental. The author seems to have no or little awareness or sense of themselves as having a disability identity. The main point seems to be about eradicating polio today, but not because we should generally be fighting for people’s health, but because the author’s life with polio is self-described as horrible. Yech. I have a lot of the same aversion to the medical model that you have, mom, and a lot of similar anger about its purported objectivity.

Sometimes when I run on like this I can kind of catch the ways I am replicating disconnection and dismissiveness more than being truly protective of my mother or myself or others, that I’m not really open or curious with safety rails on, that I’m just closed and tired and tight. Sometimes in these moments, I pontificate on the need for curiosity and questions, and then I try to get my mother to lead the way, to show me how to be brave the way I’m telling her we both should be. She’s my mother, after all, and I have relied on her to teach me my whole wide life. 


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[image description: A heart with a somewhat quizzical facial expression looks toward a question that reads, "What has helped you learn about and develop your own identity?"]

This Thursday, again, like many Thursdays, I try to get my mother to talk about her disability identity. I bear down with more questions on our Google documents. I remind her repeatedly to go answer the questions once we’re off the phone.

What were your first questions about disability identity?

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~ Karen ~

One of my earliest aware moments of being a child with a disability may have been when I was in Kysthospitalet (coastal hospital) and it started to occur to me that there were two groups of patients there. One group would go home and no one would be able to see that they might have been in the hospital. The other group which I belonged to would go home and people would see that there was something wrong with me, something wrong with my right leg. I was ashamed of being part of that second group. I had for years been going to sleep at night praying to God that I would wake up the next morning with two strong legs. I believed that God could perform miracles and if my faith in God was strong enough my polio leg would be gone, and I would have two normal legs.

Eventually I realized that my polio leg would not be transformed into a normal leg by some divine miracle. However, I still had faith that my repeated operations by Dr. Støren at Kysthospitalet would continue to improve my ability to walk and to make my polio leg look more normal. So although it would interfere with my last year at the Gymnas (secondary school), I did not resist when I was told that Dr. Støren wanted me to have another operation in the summer of 1960. That turned out to be a big mistake. I had been walking without a brace for ten years, but after that sixth and last operation my polio knee started buckling backwards so much that I ended up having to choose between wearing a long leg brace or fusing my right knee in a straight position. I chose to wear the brace because never being able to bend that knee seemed awkward and difficult to negotiate. The brace made me stronger and more able to walk, something I later came to appreciate a lot. But at first it was a serious blow to my vanity. I bought large, thick, pale stockings and wore them outside my brace, hoping to camouflage it, to make it less noticeable.

After becoming a special education teacher, I was able to accept my brace and I even wore mini skirts that exposed all the steel and leather and buckles and straps. No plastic or velcro was used to create individualized braces at that time. However, I still was ashamed of how I walked, how I moved. I still thought that the built environment containing lots of stairs and cobblestones was a challenge that was my responsibility to overcome. It was not until I came in contact with the Independent Living Movement and the Disability Rights Movement in the United States that some new ideas and thoughts helped me start consciously feeling differently about being a person with a disability.


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[image description: Karen around the age twenty-five on a boat in a skirt suit posing with her left leg over her right leg in an attempt to cover her brace from view c. 1965]

My new disabled friends, most of them polio survivors, had strong convictions about their human worth and their civil rights. Some maintained that their disability had never kept them down or set them back. Their disability was basically not the effects of polio. Rather it was caused by the lack of access in the built environment, the lack of suitable adaptive equipment, the lack of appropriate accommodations, the lack of social acceptance and understanding. I slowly learned to see my own life experiences in this new way and I thought of this as a complete conversion. It was made crystal clear to me in this statement by a young girl who described how her thinking had changed after working in an Independent Living Center: 

When I first came to Access Living, I thought that my wheelchair was too big for our toilet at home. Now I know that our toilet at home is too small for my wheelchair.

I thoroughly enjoyed this conversion and the idea that a disability is not shameful, not something to be pitied. However, I could never completely shed the feelings that my polio had indeed held me back, had contributed to my low self-esteem and my social insecurities. My polio survivor friends told stories about how their parents had always told them that they were just as good and important as nondisabled kids. In contrast, the message I got from my parents was that there was something not just different about me, there was something wrong that they were determined to hide or fix. There were times that my parents, ashamed of my polio, tried to keep me from being seen.

My mother told me that when I was still a young child they took me to a faith healer who poured oil on my head and prayed to God to take away the effects of polio. I do not remember that event myself, but I have never forgotten the message that there was something wrong with me that my parents were begging their God to fix. When that did not work, my parents put their faith in the medical profession, and never questioned the advice they got from the doctors who wanted to operate on me and test their theories of what the results would be. At the age of eighteen, I had still not developed a sense of being in charge of my own destiny, I was stuck under the ice in the creek.

After becoming an elementary school teacher, I started teaching a first grade class in Grimstad, Norway. The system was set up to expect me to be the teacher for the same group of children from first to sixth grade. I did not follow that path, because the local school psychologist, Einar Guttormsen, suggested to the school district that I start a resource room for children with disabilities.

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[image description: Karen around the age twenty-five sitting in a grassy Norwegian school yard surrounded by smiling children and one other smiling adult c. 1965]

~ Anna ~

What do you want to ask about disability identity and disability studies today?


~ Karen ~

I think that my struggles with self worth was what you would call “deeply internalized disablism.” I read this article by Catapult Smith called “The Ugly Beautiful and Other Failings of Disability Representation” from October, 2019. Discussions and writings about disability identity are flourishing on the internet. There is more than I can begin to read. Another example is a research article by several authors that is titled, “Critical Perspectives on Disability Identity.” The authors examine the social construction of language, labels, and knowledge associated with disabilities, arguing in favor of critical and intersectional perspectives on disability identity. Edlyn Peña is writing about autism. Lissa Stapleton is a deaf African American woman. The Catapult website is describing some of the experiences I have had in my life, but it does not mention the possible impact of religious fundamentalism. I totally agree that we need to adopt an intersectional perspective on disability identity, and so would all my polio survivor friends, to the best of my knowledge. But none of us have been able to understand or explain how our privileged status as white, well educated, and relatively prosperous individuals has constrained our ability to be intersectional and broadly inclusive. The independent living movement has not been as effective as the psychiatric survivor movement has at reaching poor, homeless disabled individuals with a criminal history. The contrast between Paraquad and the Empowerment Center in St. Louis is telling and typical.

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[image description: With slight frowns and leaning foreheads toward each other in commiseration, two hearts hold hands below text that reads, "Have you ever felt like you were supposed to be different in some way? What did you do about it?"]

~ Anna ~

What has stayed the same in your thinking about disability? What has changed?


~ Karen ~

My thinking about disability has gone through some serious variations over time.  As a child I thought that there was something terribly wrong with my right leg and I felt ashamed of it. I was ashamed of the way I walked, the way I moved around in the world. The shame was focused on the way I looked, I did not have many conscious regrets about not being able to run or dance, or be athletic in any way. But I was sad and depressed every time I was not included in activities like school field trips or 17mai (May 17) parades. I think my parents were ashamed of the way I looked as well. While they took for granted that my sisters would participate, they did not try to get me included in these activities. As a teacher, my mother would often take part in school related events, but making arrangements for me to be involved was not even discussed.

When I became a young teacher in Norway, I started participating in as many school activities as I could manage which meant just about all of them. The shame I felt was replaced by a strong desire to “overcome” my disability. I still saw my disability as my problem, my weakness, my challenge, but I did not want to let it stop me from living a full and responsible life. Accessible schools and other buildings were generally non-existent in the 1960s. And since I had not been around many disabled people yet, I thought it was too much to ask for, too few people would need the built environment to change that dramatically. As a graduate student in Chapel Hill, NC, in the 1970s, I met Ron Mace, a fellow polio survivor. His work as an architect has been very important.  

When I first met Ron, I was still thinking that a disability was a challenge for an individual person to handle, not something that the world at large had anything to do with. It was not until I met Deborah Cunningham at the Memphis Center for Independent Living in 1983 that I began to see things differently.

While changing my thinking about these basic aspects of disability experiences, I have also kept some key perspectives remaining the same all along. Some people say that everyone is disabled in some way. Those who maintain that are most often people who I do not consider to be disabled themselves. They suggest that if a person is not able to perform in ways they would have liked to, that is a kind of disability. So for example if you are not good at dancing, or skiing, or swimming, or knitting, you are on the disability continuum, albeit not far out there. I totally reject that thinking. A disability is a difference that puts you in a different category from the norm. It may be visible or not. You may be able to pass in most situations or not. But it represents a reality in your life that society in general considers deviant. And most people with disabilities, whether they have grown up most or all their lives with that disability, or they have suddenly become members of our group because of an accident or illness know their status as a disabled person. Maintaining that everyone is disabled in some way, erases the reality of some hard life experiences shared by a large group of people.

I have a hard time distinguishing between my thinking and my feelings when trying to answer these question. My understanding and ability to express my opinions in clear language has changed dramatically over many years, but my memories of what I thought and knew at different times are foggy at best. Luckily I do have some written documents that I can draw on. One complicating factor is that I switched from one language to another, from Norwegian to English, during a time when my thinking and understanding was seriously shifting. 
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[image description: Two hearts, one with a slight smile and one with a slight frown, look toward text that reads, "What do you imagine may be especially important for disabled immigrants?"]

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Marginalia (part 4/12)

6/6/2022

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go BACK to Marginalia (part 3/12)
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transitional whatchamacallits. 
(plural. compound noun.) words used by your immigrant mother as a substitute for direct connection to the parents, sisters, and friends she left behind; expressions and conceptual thinking that helps her deal with the separation; typically exclamations, puns, and attributions


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[image description: A smiling heart that wears a brace on its right leg and stands using crutches looks at text that reads: "Some key words in this tory are not English words. An English translation is given in parentheses right after the word. Værsågod. (You're welcome.)"]

~ Anna ~

An ability to stay safe by knowing how to talk to one person in one context, like a teacher at school, and how to then talk differently in another context, such as to a parent, a clerk at the grocery store, or a police officer, is sometimes called code switching. In addition to keeping people safe, code switching can also help people regulate their nervous systems and feel secure in different situations through the use of language. Translating words from one language to another is an additional way people regulate their sense of security.

Have you ever noticed someone who is speaking a second language and then suddenly exclaims something in their first language? They might be excited, joyful, afraid, or angry. Regardless of the emotional response, it’s possible that they are also having a nervous system reaction in that moment. Those first-language words can help the person come back to a familiar pattern of thinking from childhood, and help create ease or calm or a sense of control or stability in a tricky or intense moment or situation.


People can also gain a sense of security from connecting the differing meanings or cultural nuance of words and tone across settings or languages, or for that matter, from leaving behind unwanted meaning. And a felt sense of security is gained through the process, through the active effort of changing and reworking language. For my mother, learning English and acclimating to the cultural context of an English-speaking country literally rewired her brain. She was able at a neural level to transition her attachment by using a new label for the same object, repeatedly, until her brain was used to describing and redescribing objects and foods that gave her a sense of purpose and connection from one location to another. In some cases, hanging on to the original Norwegian and simply inserting Norwegian words into her daily life was particularly transitional and supportive for Karen’s safe transition to the United States. Krumkake (waffle cookies), bestemor and bestefar (grandmother and grandfather), ja vell ja! (yes, well, yes) — these and more were words and expressions that I grew up with and that felt to me as ordinary as their English counterparts.

For this reason, Karen's story has an international diction or word choice. You will see translations of words throughout the writing. These translations indicate words that helped Karen transition her secure attachment in one context, Norway, to secure attachment in another context, the United States. Many people use transitional objects and foodways to do this, and many people who emigrate, immigrate, and migrate, by desire and by necessity, transition their sense of security in the world through language. 

Karen’s transitional words are not transitional objects in the sense described by well-known psychologist Donald Winnicott, but rather ways of speaking, concepts, and thought patterns that have a range of meanings and mysteries to unpack. Here in the language of what we’re calling transitional watchamacallits, a word my grandmother on my father’s side, Karen's mother-in-law, brought into our family culture, Karen has found comfort in her thinking power, her power to imagine. What after all is a watchamacallit? It’s a made-up word that is not exactly “what you may call it,” but that simultaneously conveys a sense of something hard to define, yet needing definition nonetheless, something to identify with — you know, a watchamacallit.

Part of Karen’s joy and security in life, both in Norway and in the United States, has always lived in her sense of humor, and especially in puns. Humor just makes sense as a place of beauty in the margin. Humor is a core battle cry in taking a stand for our joy in the face of oppression. For Karen, puns that work across language, or jokes that are funny in one language and not another, or just being able to express humor in a new language — these are all ways that Karen helped herself to stay connected to others and to manage those early cross-cultural connections, and in turn to hold onto her happiness during a turbulent time of transition in her life.

In 2016, Régine Debrosse wrote,

Belonging to several cultural groups at the same time can be associated with complex feelings of group membership . . . many immigrants marginalize — feel detached from the mainstream culture they live in and the heritage culture they grew up in — while feeling happy.

For Karen, being a thinker from childhood was a core part of her identity, something she could just know she was good at without question. At the same time, Karen’s translations, word choices, and puns and jokes decentralize power from those speaking a single dominant language and create shared authority across multiple languages and at the site of Karen’s own knowledge base. This shared power has allowed Karen to access a more fluid meaning-making process in the wider margins and in the margins of Karen’s own heart and soul.

In this way, the transitional whatchamacallit translations and word choice of this story is also a response to anti-immigrant policies, attitudes, and violence through homegrown, people-powered cultural reclamation and syncretization. 


~ Karen ~

You know that when I turned twenty, my twin sister turned . . .


~ Anna ~

My mother loves this joke so much. It doesn’t work as well in written form.


~ Karen ~

Twenty too! 


~ Anna ~

It sounds like twenty-two, t-w-o. And that doesn’t make any sense since they’re twins.

This pun doesn’t work in Norwegian. My mother told this pun probably literally hundreds of times just since I’ve been old enough to understand it, maybe hundreds more before then.


~ Karen ~

And when I turned thirty, my twin turned . . . And when I turned forty . . .

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[image description: A smiling heart that wears a brace on its right leg and stands using crutches looks at text that reads: "Multiple translations and definitions may be given in the text. Værsågod also means help yourself. For example, help yourself to food."]

~ Anna ~

I have been learning Spanish my whole life. I’ve studied in the classroom since I was a teenager, as well as traveling to Spanish-speaking countries. Still, I have not gotten fluent. But sometimes I dream in Spanish. In these dreams, I make contact with the way the brain can flexibly use multiple languages to wire and rewire one’s own automatic thinking. I wake from these dreams, typically, feeling serene at first, and then astounded. I can understand how unconscious feelings can migrate around in us through language. 

In Ezra Klein’s 2019 podcast “We don’t just feel emotions. We make them,” Lisa Feldman Barrett explains how having a word for a set of sensations and information coming through the senses to the brain both gives rise to the experience we call emotion and helps shape that experience. For example, telling a kid, "Oh, you're crying; you are sad," can help that kid feel sad again in the future because they have a word now for what they were feeling, and that kid may even feel sad more often or more intensely. In some languages where there is a word for an experience, a concept for that experience feels natural. In other languages where there is not a word for the same sociophysiological experience, the same concept can feel foreign and even incomprehensible. 

On many fronts, language conducts a ton of energy, information, meaning, and impact. In the telling of Karen's story, we attempt to be mindful of the impact language can have on connecting us to or disconnecting us from the margins.

As such, it's vital to acknowledge that all of the languages in this story are languages of people and groups that have conquered, dominated, or committed violence against other groups. English, Norwegian, Spanish, and Hebrew. Additionally, Karen has not been regularly speaking or thinking in Norwegian for many years by now, and the vast majority of this story is being written in English, the only language that I speak fluently.

On the phone, Karen tells me,

I’m going through my papers. Throwing things out that are duplicates or not important to me. Two big containers of photographs. I would like to go through some of this with you. I threw away many letters from Sigrid. I don’t need to know all about all of her boyfriends. I threw out quite a few of my twin sister’s letters. She sent me so many letters that started, “I am continuing the tradition of writing Christmas letters from Sweden.” It usually was about some thing where they went shopping, or house care, or meeting with friends. Haldis never wrote deep insights into anything really. Some letters were about how she had been preaching, but she didn’t say much about what she said. Some of the letters I’m keeping because they’re more substantive. But they’re all in Norwegian. And I’m keeping a few letters from my mother, too. And they’re all in Norwegian, too. It feels like I’m freeing myself from this compulsive idea to hold onto everything that came from Norway. It’s a little less obsessive. 

In the face of her surrender, I press on, asking her to write down more of what she remembers. I write a question on the computer — linked in real time by the magic of the Internet — for her to look at and respond to miles and miles away from me. 

What are some of your favorite words or sayings in Norwegian?


~ Karen ~

I live my life in English now, and most of the Norwegian words that come to mind tend to block my ability to come up with the appropriate English word for the moment. To answer this question, I would have to do some deep thinking.


~ Anna ~

I keep pushing us forward, typing more questions to her.

Do you have favorite Norwegian artists, writers, and thinkers? Who are they and what did they show you?

I wait. I breathe softly with her over the phone. She breathes with me.

And the flood gates open. 



~ Karen ~

The the first books I read that described in a sensitive and realistic way what it is like to be in love and have sex were Sigrid Unset’s trilogy, Kristin Lavrandsdatter. I lived and taught in Grimstad at that time. Undset was born in Denmark, but her family moved to Norway when she was two years old.

When I was younger I was moved by Knut Hamsun’s description in 
Markens Grøde (Growth of the Soil) of how Norwegians during past centuries cultivated, farmed, and lived off the scrappy land. I've heard much later that he was a nazi.

I brought a book by Jens Smedslund with me from Norway to the United States. The book described his research with children that built on Piaget. I no longer have that book, and I cannot find it in his list of publications, but there is an article that I think is covering the same topics: “The Acquisition of Conservation of Substance and Weight in Children. VI. Practice on Continuous Versus Noncontinuous Material in Conflict Situations without Reinforcement.”

Inger Hagerup’s 
Lille Persille has fun poems for children. There are a few I translated years ago.

Whenever Edward Grieg’s music comes up on our TV station for classical music, BJ turns up the sound really loud, especially if I do not happen to be right there. Ingrid Espelid Hovig was a Norwegian television chef and wrote cook books as well. Her signature phrase after finishing a recipe was, “og litt grønt på toppen” (“and a little green on the top”). While attending Spesiallærerskolen (special education teacher training) in Oslo, I lived with Haldis near the Edvard Munch museum. I loved his paintings, especially 
The Scream and The Day After. I love this description from the Smithsonian on Munch's work: “Edvard Munch, who never married, called his paintings his children and hated to be separated from them.” I loved to listen to Alf Prøysen’s music, especially early in my stay in the U.S. At times when Jerry and I were fighting, I would sit in my bed and play his music loudly to drown out whatever Jerry was saying. During the year that I stayed in Oslo with Aslaug and Petter Kirkevold to get treatment for my polio leg, they took me to see a show by Sonja Henie. I got to sit right next to the ice rink. I was so close that I could almost touch some of the big feathers she wore and swung around. I felt proud to be from the same country as explorers like Fridtjof Nansen and Roald Amundsen. 

~ Anna ~

My mother loves her twinkle lights. She wants to look at art she painted and hold objects in her hands that she brought with her from Norway. She was enamored of a gadget that swiveled open with multiple hooks to hang coats on that you could attached to a door or wall, and was pained to see it go to Goodwill when neither my sister nor I felt compelled to keep it.

But she is also deeply committed to the news and to looking at the headlines that come to her over her cell phone. She seeks intellectual stimulation automatically. I get it. So much of my identity is also built from my sense that I'm smart, that I have interesting ideas.

Perhaps, I muse, Karen's cell phone may be a meeting of transitional object and transitional whatchamacallit. Margaret Hefferman has said that, "The cell phone has become the adult’s transitional object, replacing the toddler’s teddy bear for comfort and a sense of belonging.” But my mother never ceases to find meaning through her phone. In 2022, Karen looks up from her cell phone at me late one night while I sit by her bed handing her a bottle of ginger ale for the nausea, and says with awe in her voice, "There's a . . . what's it called?" She pauses. She is pausing more and more. This one is a long pause; I start looking at my own phone. "Meteor. That's the word. There's a meteor shower coming. Isn't that cool?"

And still, I have more questions.

Do you have Norwegians who you disagreed with? What did they think? And what did you think?


~ Karen ~

I still have this book, Kom Skal Vi Synge (Come Let Us Sing), by Margrethe Munthe that contains a number of children’s songs. My mother loved this book because she liked the ideas expressed in the songs. Children should above all be compliant and calm. Children should not be defiant or loud. Children better not be angry because if they were angry too often, nobody would love them. When I became the mother of two daughters, my expectations contradicted my mother’s in just about every way. We did that co-living thing. (See previous section.)

And I think I should also talk about this one other book that my mother used to read for the youth group out loud. The one about gypsies, a word I know now is derogatory. At the time, the way my mother read that book, well, it became sort of dramatic. I didn’t have very many misgivings about it at all until much later. But it was a very important thing for my mother to convey how if you are an upright believing Christian it shows up in your life and in your children. This is what set Christians and gypsies apart in my mother's worldview. And the fact that Haldis still has that book — I don’t think she has any misgivings about it yet.

I suppose . . . I suppose you could include my mother, too, in the people whose ideas I disagreed with eventually. The Kristin Lavrandsdatter trilogy was such a stark contrast to the books my mother had encouraged me to read. Some books had a young girl who was totally passive and waiting for a nice guy out in the world doing who knows what to come back and decide to marry her. And the woman’s role in my mother’s mind was essentially passive.


~ Anna ~

I can feel the heavy sludge of childhood trauma creep over Karen as she falls quiet for a moment. The sludge creeps over both of us.


~ Karen ~

​Especially me.

It was like my mother was waiting for someone to choose me.
​
And yet clearly I wasn’t eligible to be chosen because of my disability. She really wanted for me to be perfectly passive and somehow chosen, even while she didn't believe that would ever happen.

So I’d like to add something like that to the book. That the 
Lavrandsdatter trilogy was the first description of a sensitive way to be in love and have sex that I had ever read; I had never been reading that anywhere before. The things I was encouraged to read were so based on my mother’s idea of the kind of life she expected me to have. 
​
​
Picture
[image description: Two lines of sheet music are followed by lyrics in Norwegian. At the bottom is an illustration of the hands of an older person with a comb and scissors. They are cutting the hair of a younger person who is looking down at the ground and smiling. The text in Norwegian reads:
Jeg skriker ikke jeg!
Jeg skriker ikke jeg,
og jeg er ikke sint og lei,
når jeg skal vaske meg --
å nei — å nei — å nei!
Og kommer mor med saks,
som hun vil klippe negler med,
så skal du nok få se
at jeg skal bare le!
Jeg skriker ikke jeg,
fordi om mor skal gå sin vei
og ikke tar med meg --
å nei — å nei — å nei!
Jeg tier ganske still,
jeg skriker ikke, det er klart,
så kommer hun nok snart
— og har med noe rart!
(​I'm not screaming!
I'm not screaming,
and I'm not angry and bored
when I wash myself --
oh no — oh no — oh no!
And if mother comes with scissors,
which she will cut nails with,
then you will probably see
that I will just laugh!
I'm not screaming,
because if mom's going her way
and not taking me --
oh no -- oh no -- oh no!
I'm pretty quiet,
I'm not screaming,
of course, she's probably coming soon 
— and has something strange!
)]

~ Anna ~

Tell me anything else you want to about language. Anything at all.


~ Karen ~

When I first started living with my children, I was also living with your father, Jerry. Language was an important issue in several ways. I decided not to teach my daughters Norwegian, even though I knew that growing up bilingual was an advantage for kids who could handle that. Because I had visited Norway with Jerry, and we had spent time with people who spoke Norwegian, I knew that the politics within our family would not be comfortable if the kids and I were able to communicate in a language he could not understand.

Jerry and his family were extremely verbal, and I was still learning to fully express myself in English. Our first daughter, Riina, did not start walking until she was fifteen months old, but started calling me Mama when she was about six months old. 
​
​
Picture
[image description: Riina, Karen's older daughter and Karen sit at the table of an outdoor restaurant and lean heads together. They are both smiling brightly, Karen's chin is resting in her hand, and Riina has her hand around Karen's arm c. 2019]

~ MWe ~

Karen: What words do you remember making up as a kid?

Riina: Peba. That meant pick me up. I think I was also committed to saying poon instead of spoon.

Karen: When in the house Grandma, your father’s mother, bought for us and you were three or four years old, you were out on the patio one day walking around, and you were talking and talking and talking in words that nobody understood. Language was just pouring out of you.

Riina: That’s the story of my whole wide life.

Karen: Was it difficult for you ever to grow up with an immigrant mother with a disability?

Riina: It was annoying when I was ten and we would go shopping and people would ask me questions. I was like, dude, I’m the kid. Ask my mom.

Karen: Kids didn’t make snide comments?

Riina: I was a big enough nerd that they would just make fun of me directly.

Karen: Were you ever ashamed around me?

Riina: No.

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Marginalia (part 3/12)

10/7/2021

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co-live. (verb.) 1. to remain alive together; 2. to make home in a particular place and in a particular way together; 3. to develop one’s life skills, social identity, and collective awareness through mutual necessity and with mutual benefit
Picture
[image description: Illustration in the style of Anna's #MindfulHearts (www.MindfulHeartsComics.com). A heart at the left sits in a rolling office chair and says, "Every sentence has a passive voice or an active voice — or a middle voice." Another heart at the right sits in a wheelchair and responds, "So we share the narration and the tone." The words and, the, and tone are all underlined.]

~ Anna ~

This part of the marginalia may be difficult to explain. I don’t know if it will make a lot of sense to people who speak English. It has to do with the voice of the story. The voice is a different thing than the narrator, or the person telling the story. 

We just established who the storyteller is — Karen, Anna, and sometimes MWe. But the voice is how the teller sounds when they tell the story. The tone. The style. In other words, what Karen or Anna or MWe sound like as the narrator. 

And we’ve decided that we both want to speak, as much as possible, in a way that actually isn’t that common in English. 

Does this make sense so far?


~ Karen ~

You think so deeply, Anna. Just try.


~ Anna ~

People impact each other. We both cause impact and are impacted.

This is a fundamental truth that my mother has known in her bones her entire life.

My mother tells her story to me, and I receive it. I tell her story to you, the reader, and you receive it. I am both a receiver and a doer at the same time. I both learn and invent. Impacted by my mother and impacting our readers.

My mother shares her story, and she is her story. She is both a doer, engaging in storytelling, and a receiver, being witnessed by others for who she is and what her life has been. She is both telling her story and learning to see her story as important to tell. Impacting my ability to help her craft her story and impacted by our readers and their perceptions of her.

This is also exactly what happens when you teach kids through a process called co-active movement, a strategy that my mother believed in early on as an educator. Basically, when you move in tandem with a child, you learn together. Both of you do actions, each for yourself. Both of you are perceived as knowing things and learning things. You invent yourselves alongside each other. That is the point of view of this book. My mother calls it co-living.

By the time my mother got to the United States in the early 70s and nearing the age 30, she had already adopted psychologist Jean Piaget’s view on education:

“Children have real understanding only of that which they invent themselves, and each time that we try to teach them too quickly, we keep them from reinventing it themselves.” 

Piaget called for teachers to stop being lecturers, to stop handing out ready-made answers. Instead, Piaget wanted teachers to act as instigators of research, initiative, and invention. Piaget wanted adults and children to practice what would come to be known as co-learning. Co-learning is a style of education where everyone learns together, everyone brings ingenuity and wisdom to the learning process, and at the end of the day, everyone learns.

My mother understood that this co-learning model was bigger than education and was part of how we live. Some core part of her sensed from a very young age that medical attention for her disability was too often about her being a passive receiver of care. Doctors and her parents were the active agents of change in her childhood — change that she mostly didn’t need or want or deserve. 

Kysthospitalet (coastal hospital) where Karen spent much of her childhood primarily treated patients orthopedically, and all of Karen's bone surgeries happened at this hospital. The final operation on Karen's right leg caused Karen's knee to buckle backwards. That is when she stopped going to Kystha.


Picture
[image description: Karen (left) with her teacher (middle) and another woman named Lillian (right) on the veranda at the Kysthospitalet (coastal hospital), where all the beds were rolled outdoors as was customary for tuberculosis treatment. Handwritten text reads, "Eg, frøken, og Lillian," (Me, teacher, and Lillian). c. 1954]

However, it took decades for my mother to be ready to assert herself more fully as a creator in her own collaborative care. But by the time she was becoming a parent in the United States in the late 1970s, she was ready to start co-living in society, by necessity. She was going to be a mother, and she needed to be a different kind of parent than her own parents were. She understood that to do her pregnancies in ways that were right for her and that included her voice and her decisions, she was going to have to take a stand for herself as a disabled woman in a world hostile to disabled women.

My mother also understood that her mother’s way of dealing with the gender roles, binaries, and power dynamics in her parents’ marriage, her mother’s kind of womanhood, needed to change in her own marriage, for the sake of her daughters, and for her own sake. And my mother needed a powerful tool fueled by love to make that change. My mother chose to co-live.

​

~ Karen ~

In 2020, I was interviewed by my dear and good friend Lynn Rose for her podcast for the American University of Iraq about my experiences with disability and gender. The interview explores some of how I figured out that I needed to do gender differently from my mother and from the rest of the world. A link to the podcast is posted below
.

The whole podcast could be listened to right now before reading on. The interview is about 50 minutes long. Or, the podcast could be skipped for now, and maybe come back to later. Listening to this interview won't be necessary for understanding the rest of this section.

To listen to the entire podcast, go to this web address: 
https://soundcloud.com/auis/lynn-rose-speaks-to-karen-hagrup
​
Picture
[image description: Lynn Rose and Karen Hagrup's headshots are shown side by side with a bar underneath displaying information that reads: "CGDS, American University of Iraq, Sulaimani, The Center for Gender and Development Studies."]

I am not sure when I first came up with the word co-living. When I had my daughters I knew that I wanted them to learn from me by living with me. I did not want to preach at them. I knew that they would not learn from my words. Rather, they would learn from the way I lived my life. 

Before becoming a mother, as a special education teacher, I wanted to be with the kids and share questions, experiences, and activities, rather than lecturing or commanding or scolding. Even as a teacher for deaf-blind, profoundly retarded, autistic rubella children, I learned to use a program called co-active movements to see if they could learn to relate to people or events. 
​
[image description: Image of YouTube video titled, "Child-Guided Assessment by Dr. Jan van Djik," who developed the educational model of co-active movement that Karen utilized as an educator.]

Even though I’ve been thinking about this concept for a long time, I think it was only a few years ago when I was telling you, Anna, about these thoughts and convictions that I first used the word co-living.

By now I understand co-living as having to do with being in an intimate relationship and sharing life experiences, especially all the challenges and benefits of growing old in a non-heternormative partnership. It is much more reciprocal, learning from each other and finding comfortable ways to accommodate each other, while also maintaining healthy boundaries.
​

~ Anna ~

Karen’s story joins the twentieth-century U.S. disability rights rallying cry, “For people with disabilities, by people with disabilities!” by purposefully deploying a co-living narrative voice, what linguistics nerds call the middle voice. 
​
Picture
[image description: Another illustration by Anna. A book with the title on the cover, "Meet Me in the Margin," has a face, legs, and arms, and stands facing the viewer and pointing to its own speech bubble. The book says to the viewer, "I tell myself to the world, my way, with my truth."]

You may have learned at some point that in English you are using the active voice in the following sentence, “She cooked the dinner.” What we call passive voice occurs in the sentence, “The dinner was cooked.” In the second sentence the person who cooked the dinner is implied. But perhaps you never learned that there is a middle voice, such as in the sentence, “The dinner cooked on the stove.” The middle voice isn’t completely passive, but it’s also not completely active. Actually, it’s both. That’s because the doer of the action and the receiver of the action are the same. The dinner did the action of cooking, but also the dinner received the action of the cooking. The dinner both cooked (itself) and was cooked (by itself).
​
Picture
[image description: Illustration in the style of Anna's #MindfulHearts (www.MindfulHeartsComics.com). A heart at the left sits in a rolling office chair and says, "Every sentence has a passive voice or an active voice — or a middle voice." Another heart at the right sits in a wheelchair and responds, "So we share the narration and the tone." The words and, the, and tone are all underlined.]

The fundamental thing to know about the middle voice is that it cuts through binaries and reinforces co-living. In middle voice — or, what we’re calling the co-living voice of this story — two-category, top-down systems, like a clear doer and a clear receiver, break down along a continuum of everyone doing and receiving. 

As you may have guessed already, the middle voice is not particularly common to English, and only somewhat more common in Norwegian. So while the sections, paragraphs, and sentences of Karen’s story are clearly written in more common active and passive constructions that are common to English, we have aimed to make the overall voice of the text somewhere between doer and receiver, or rather and as much as possible both doer and receiver. 


~ Karen ~

This idea of “for and by people with disabilities” is based on the independent living movement and the political aspect of that. Before the independent living movement, services for disabled people were handled by professionals or experts who were in charge of making decisions, and those decisions were enforced by policies that were not written or created by disabled people. 
​

Picture
[image description: The front door of TRAC & TRAIL, the independent living center non-profit founded by Karen in Chattanooga, Tennessee, in 1986, run by people with disabilities for the services people with disabilities needed to live independently. The poster in the front door reads: "Put us on the fast track...Employ People with Disabilities."]

~ Anna ~

Everywhere in human history, disabled people have lived with nondisabled people. At the same time, there is no single story of disability, no one narrative that explains what disability is. Many disabled people have worked together in many different ways to stay alive, to adapt the world to their needs, and to claim recognition for their experiences. My mother is claiming her boundaries all the time, claiming her multiple truths.

Throughout the story, we mindfully explore multiple nonbinaries, rejecting this-versus-that constructions. Rather, as writer Todd Pittinsky argues in his book, Us Plus Them, we gather in multiple ways of storytelling, and we view all of these ways of storytelling as additive. We also believe that this pluralistic, third voice supports sharing responsibility, as well as breaking down and breaking free from strict roles. 

As a young person, Karen rode on her sister’s bike to school and was driven around by male adults. Later, as a disabled woman, after Karen learned to drive she became the main driver in her world, driving well before her husband was a driver, and continuing to be the main driver in her family throughout her marriage. And even later after that, as Karen’s wet macular degeneration progressed, she began again to rely on someone, BJ, her female life partner, to drive her home from doctor visits. Karen's driving journey blurs gender and disability lines from a black-and-white narrative about who is the driver and who is driven. 

In this way, the co-living voice of this story is also a response to sexism and to ableist sexism in particular, through co-empowerment. Karen and BJ are empowered by themselves and each other. They are both doers and receivers of power.



~ Karen ~

You know, even before I knew about the independent living movement, I was disturbed by the behaviorist view of education where the teacher was in charge. That offended me big time.

In Norwegian, the word for teaching and the word for learning is the same: lære. I teach you, you learn, You teach me, I’m learning, you’re learning — they’re all the same word. The sentence “Jeg lærer,” can be translated as both I’m learning and I’m teaching myself. 


~ Anna ~

That’s cool, mom. I love that Norwegian works that way.


~ Karen ~

Me too.


~ MWe ~

MWe three?


~ Anna ~

And yet, we must acknowledge that at times neither I nor my mother exist in the marginalia of nonbinary co-living, where neither of us are marginalized by gender standards. While I identify as genderqueer, I often present as feminine. Karen identifies as a cis woman. Outwardly, both of us hold some space at the center of the page regarding gender because neither of us are as marginalized as folx with nonbinary and trans identities. 


~ Karen ~

Yes, but Anna, you are really saying something important here. You are showing how my story belongs. It’s not the most important story. And it’s not unimportant either. My story belongs to history.

​
~ MWe ~

The story tells itself because no one person owns the story. The story is the historical record and the perceptible truth. The story is the result of the action and is also the action. It’s both what happened and how it happened. In this space of truth that is universal and shared, the characters tap into both action and reaction, to a place where they both participate and observe, and to a home and a society where there is mutuality in the way the story unfolds.

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Marginalia (part 2/12)

9/19/2021

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MWemoir. (singular. noun.) a historical record or biography composed from intrapersonal and interpersonal accounts
Picture
[image description: Handwritten text against a light swirly pattern. The text reads: "~ MWe ~ When I see this heading, who is speaking?"]

~ Anna ~

When you read this co-biography you’ll see some sections that are marked ~Karen~ at the top and others that are marked ~Anna~. A primary marginal embellishment throughout the story, these headings indicate who is speaking. But they also offer a unique note about some of the text — the occasional introduction throughout the story of an interpersonal narrator. Sections marked ~MWe~ also tell the reader that the speaker has changed. But this third speaker is not a third person whose name is MWe. Let me explain.

Neuroscientist Dan Siegel says that “the self is not defined by the boundaries of our skin.” He goes on to explain how it is true that part of myself is me, the stuff inside my body and head, my spirit, my personality and preferences. But myself is something more than all of this as well. According to Siegel, the mind is not the same thing as the brain, or any of those other parts of the body that are also intrinsically Me. The mind is actually the brain plus the information the brain shares, both sending and receiving, with other brains. In other words, relationships. For this reason, selves are also always in part relational entities as well — Me plus We. But rather than a Me and a We, side by side, the self in total becomes something altogether different and more, a MWe. 

When my mother asked me to join her in telling the world the story of her life, I was excited and scared. How in the world could I — could we — do this honestly and me not end up taking over her voice in parts? In addition to the parts she would write and the parts that I would write, a co-biography, we wanted a new framework of understanding, a place where our relational selves could speak. The place where my mother’s inner being extends outward in the dance of life with other beings is not autobiographical, automatic from within her and unaffected by her relationships. This place is not biographical or even co-biographical either, a gaze from the other into her life. In the overlapping margins of my mother’s Me and my Me and our We, there is a story of my mother’s life, in her voice, but where I come in as well. For this reason, we’re calling this story, more precisely, a MWemoir. 

For many reasons that are common in the margins, the marginal space of the MWemoir is not easily defined or described here at the center of the page. 

I don’t yet know, for example, what the narrative point of view of a MWemoir is. Well, except that I imagine it to be less rigid — you over there, me over here. I don’t know if my mother’s MWemoir should have been written entirely in first person from her point of view, or if my first-person point of view when it comes in is, yes, partly the perspective of an outsider looking in, but also partly already her story, too, because of our relationship and having been raised by her. There is a lot about a MWemoir that is mysterious to me and to her, and may well be very different for the reader, too, who is likely more used to reading discrete memoirs written by a single biographer about a separate and separated individual.

Still, there are a few things I think a MWemoir is and does. For starters, the MWe narrator is not an individual, but rather a messy something more than one person. The MWe of this story is neither dependent nor independent, but mutual, the perspective of shared, interpersonal needs and benefits, and not the concentration of power in one storyteller. The ~MWe~ heading also signifies an intergenerational narrator whose identity is the interdependent relationship between a mother and a daughter, and to some degree a daughter and her deceased mother, father, and grandmother through which all of these voices matter to the story. In this way, the marginalia of the MWe is also a direct response to and disruption of ageism, and in particular of adultism.

Ageism is perhaps most often used to refer to the oppression of older people. Adultism refers to the oppression of young people.

Here are some other aspects of this interdependent point of view, as MWe see it. 

This MWemoir includes the benefits of intergenerational discourse, where there is no best, most important age, where younger people and older people are not silenced, and where wise and innocent and past, future, and present are mixed together. In a MWemoir every age and generation has a place in intergenerational healing.

This MWemoir celebrates healing through collective care, intergenerational learning, and decentralizing power from individual stories, or even collections of individual stories and redistributes a share of power to the collective as an entity unto itself.

This MWemoir has original text inserted that was written by additional members of Karen’s family, including parents, grandparents, siblings, romantic partners, and children, which widens Karen’s MWe in the story to a constellation of perspectives, influences, and interchanges.

This MWemoir nevertheless is also influenced by Anna in her middle years, narrating from an age that is centered in society. Anna’s large role in shaping the narration demands that MWe maintain curiosity about how to keep uprooting blind spots in this normative age perspective that is often found at the center of the page.

And finally, this MWemoir includes direct addresses to the reader and from one narrator to the other. Mostly, Karen addresses Anna, viewing Anna as her support in telling her story. Mostly, Anna addresses the reader, viewing herself as interpretive support to Karen’s story. Sometimes this all goes differently in the moment and in the MWe. 

It’s wild out here in the marginalia of a MWemoir. But MWe hope you stick around.

[image description: Image of a YouTube video titled: "Karen and Anna explore their MWe."]


~ Karen ~

Ok, Anna, I get that there is a third narrator that is you and me together. And the headings will help with this. But I have a very clear sense of what is my writing and what is your writing. Is this something that others have a fighting chance of picking up on our two different writing styles or literary voices? 


~ Anna ~

Like even in a section like this one that has an ~Anna~ header, it might sound like your voice?


~ Karen ~

You were talking in your introduction about how you felt that you were bad at singing, and I didn’t quite remember how strongly you felt about that. That was like you revealing something that I hadn’t quite owned in terms of memory about you. Then of course when you quote my writing in that essay, well, I know and you are saying it right there that I started and wrote that essay. So, that’s me. But then there are also places where you talk about me, but it’s still about you. And sometimes maybe when you talk about me it could almost sound like my voice, even though it is also your voice — it’s still you talking. That’s like a third voice when you’re talking about me like that. Do you know what I mean?


~ Anna ~

A third voice. That’s interesting, mom. 

We’ve now established that in the margin of your story where you and I meet and overlap there is an interpersonal narrator, a third storyteller who is part you and part me and mysteriously altogether something else, a ~MWe~. But you’re making me realize that in addition to three storytellers, ~Karen~, ~Anna~, and ~MWe~, any or all of these storytellers may also be telling the story in a third voice or from a third perspective that is not precisely first person or third person, not entirely passive or entirely active, not entirely “The trip happened when I was young,” or “I went on a trip,” but something between these, something active and passive at the same time: “The trip unfolded in mysterious ways and changed the course of our family history.” The trip is doing something by unfolding, but it is also experiencing the doing in its unfolding.

No doubt some of the story is in second person as we speak directly to each other and to the reader, invoking both the singular and plural you as a perspective from which the reader is invited to join and follow the narrative. 



~ Karen ~

You’ve got that part right, Anna. I love talking to you.


~ Anna ~

Reader, I hope you’re able to follow some of this. I hope it becomes more clear in time.

But, yeah, I now suspect that there’s something else happening in the margin, a voice that is not second person so much as it is both first and third person together, both passive and active, both self-spoken and spoken about, simultaneously. It’s a voice that isn’t so common in English, I think, or maybe generally in rapidly industrializing, Western, patriarchal, colonizing cultures. But at the same time, this third voice maybe exists for us because of and also within our overlapping experiences of gender injustice.


~ MWe ~

Sounds like there’s some research MWe could do?

Yes, you can look that up.

Hahahah. Indeed, I have an idea.

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Marginalia (part 1/12)

7/9/2021

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marginalia. 
(
plural. noun.)
denoting marginal
​notes or ​embellishments

​
Picture
[image description: capital letters N and B, where the right side of the N and the straight side of the B overlap, followed by an exclamation point, as shorthand for nota bene, meaning something important to take note of]

~ Anna ~

In most books the margin is a blank white, open, and seemingly unstructured space. Yet there is a kind of a structure to the margin of printed texts. You can see some of this structure more clearly where someone has passionately scribbled a note along the side of the page, perhaps arguing with the author, or perhaps as a reminder to themselves to come back here. But sometimes what happens in the margin has less and less to do directly with the center of the page. Sometimes we are lucky enough to notice that the margin is its own world.

I’ve been thinking a lot about the way my mother’s creativity, thinking, and writing has never stopped, no matter how marginalized she has been, by her family and by society. She has endlessly looked for new ways to solve situations and bring more color and new insight to basically everything she touches. And she has long known this about herself. But she hasn’t had a word for this drive in her until I suggested one.

Marginalia. 

I like this word. I like the word marginalia in a similar way that I like the word marginalized and the framework each word can offer in seeing our marginal experiences. The 1960s concept of social marginalization helped generations after confront a world that was good at pushing many people and groups to the edges of society. Since then many have worked to center people’s marginalized stories in order to achieve social change. But the center is, well, still the center. 

While having drinks with a social change agitator, this friend and colleague reflected to me that the fame and notoriety of some of her peers and their entry into mainstream prominence was troubling to her. She wasn’t sure how their newfound followings were creating foundational change for the people they intended to be standing up for — and, supposedly, with. She wondered if in the process of a few breaking through many, many more were leaving people behind in the margin in the same old, familiar ways. I told her that I was riding that tension myself, wanting my mother’s story to get out there, wanting to be well-known, and knowing that meant my mother could become subsumed by a kind of royalty-making of a handful of now somehow elite marginalized experiences. I told my colleague that my mother and I wanted to do something different, to invite the world to do something different. I shared how I was unsure of myself in that process, but that I suspected that maybe the difference could have something to do with distrusting the center. 

In writing about the margin and following my intuition, I am taking a leap of faith. I don’t know where the pieces will fall. And I’m pushing my mother along with me. I worry that like the time I once pushed her too fast in her manual wheelchair and hit a bump and toppled her to the ground that I may topple her identity out onto the page. I check in with her often in hopes that we can make this leap together and find out the impact of our actions and of her life while holding each other’s hearts with care. 

I turned to my colleague and I declared that what happens in the margin matters, has always mattered, and will always matter. Period. My colleague nodded and said she wanted to hear more. I breathed out. I think I could feel my mother’s tightness, her anxiety about mattering, in my own body.

Getting curious about the word marginalia has led me to others who share a similar curiosity in this edge work. In 2019, Vernon Press published a multi-authored volume of collected essays that “immerses us into the fertile ground of the ‘margin’ and its fluid and porous relation to the ‘centre’ across history.” Shortly after, also in 2019, Benjamin Wild gave a TEDxSherborne talk titled “The Magnificence of Marginality.” And in 2018, Jacqui Palumbo took another look at the art and work of Diane Arbus, known for using photography to normalize marginalized groups. Arbus herself wrote, “In a way, this scrutiny has to do with not evading facts, not evading what it really looks like.” Edge work itself, the work of uncovering and uplifting what happens in the margin, often exists at the edge of mainstream thinking, writing, and art and at the periphery of mainstream living.

Well into the middle of her life, after giving birth to me and my sister and many years of raising us, my mother was still operating on and modeling for me and my  sister her struggle with an internalized but uncomfortable lesson that you are more interesting or worthy when you are in the limelight. She believed that centered and visible text was the only writing and storytelling that could clearly and effectively communicate complexity in this world, and possibly, she worried deep down, the only text that mattered.

As I reread the opening of the essay she started in 2005 for a collection of essays on disability in the field of education that she was invited to contribute to, I listen deeply to her literary voice. Her perspective as a doctorate of education was imbued with a lifetime of deep curiosity about the intersection of disability and culture and its effect on learning and development. Her essay was never finished and the writing she did for this collection was never published. Eventually the collection was completed under the title Disability and the Politics of Education: An International Reader. When I look through the table of contents I worry that the book that was published is too center-of-the-road academic. That it missed an opportunity to catch the ordinary joy of everyday humans, writing in everyday language, in favor of academic-ese. I regret that my mother’s straight talk is not there to remind us all that academic centering can also be a dangerous proposition for people with disabilities and for immigrants. 
​
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[image description: cover design of Disability and the Politics of Education: An International Reader]

I read the first page of her essay again. And I listen. I can almost hear her speaking to me again through this 2005 version of herself carefully composed on the page, trying to be noticed, but committed to being herself.
​

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[image description: screenshot of the opening of Karen's 2005 draft essay on the intersection of disability and education with a cross-cultural lens from lived experience]
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[image description: screenshot of some of Anna's edits to Karen's 2005 draft essay]

~ Karen ~

(c. 2005) Imagine a sheet of paper with text written on it. The edge is where the paper stops and begins. The margin is the space between the edge of the paper and where the text begins. And the complexity, if it is there at all, is in the text.
~ Anna ~

In many ways, my mother has always been happening in the margin.
~ Karen ~

(c. 2005) Where is the edge of the world? I believe the place where I was born is part of it: just north of the Arctic Circle, not quite north of the tree line, on a rugged coast facing the North Sea.
~ Anna ~

And in many ways, like Frida who she adored, my mother has always been painting her own reality — in the margin. She had to, of course. But she also did so with candor.
~ Karen ~

(c. 2005) The poverty ravaged fishing and farming community was home to a deeply religious population and was occupied by the Nazis during World War II. The town was so far out on the edge of the world that I have often thought of it as belonging to the nineteenth century. I surely was surrounded by thoughts and ideas from the nineteenth century when at three and a half I contracted polio. My parents were told by their neighbors that they must have done something horribly sinful and that God had punished them by giving me polio.
~ Anna ~

When my mother wrote this essay in 2005 she was still trying to center her voice by fitting into other people’s boxes — in academia, within her family, on the written page. In a world that had marginalized her for decades, she understood that the complexity of life was only widely visible to others at the center of the page. She was trying to get to the middle; she was trying to be seen. But the meaning of her life, perhaps hidden to others, the pieces of meaning embedded in her having been asked to submit a chapter for a book never to hear back again on its publication, my clumsy attempt to support her English grammar, her life story edited down to several pages of stark, true, and inadequate sentences about her life’s journey so far — these bits of very big meaning were there all along in the margins, unfolding rapidly and beautifully and mysteriously. Her story is not a center-of-the-road story. In fact, she had to fight her way from the edge of the world (northern Norway) into a mainstream setting (the United States) in order to gain a marginalized identity (disabled and proud). 

And that is where I want to meet her — still encoding the meaning of her life in the marginalia, the creative content that my mother is still making for herself around the center of the page. 

She sits in her condo in St. Louis looking at her hummingbird feeder and waiting for the hummingbirds to arrive for the year because it brings her joy, while also contemplating if she did enough as a disabled person to change the world for other disabled people and why it has been so hard for her to get noticed for what she did do.

I am here sticking it out with her, holding her in my certainty that she does matter and that her story matters. I am dedicated to telling a story that belongs to someone who has been dedicated to me and my growth and my joy my whole life. 

On days when I visit and we write together, she goes through her old papers again, trying to figure out what to throw away. Which poem is an important footnote to her childhood? Which drawing deserves an asterisk? Which ideas merit further definition?

I am a white, nondisabled person with an increasing range of lived experience. But I carry a lot of middle-of-the-road privilege and I can still sometimes forget how much everything always changes and be rapidly humbled again by a personal tragedy. Still, my writing lives more and more in the middle of the page, and my mother knows it. 

When she asked me to help her write the story of her life, she knew that I could get her onto the center of the page where people could see her. I can and I will work for her toward that goal for as long as she wants me to. But the center of the page is not her story. Her story lives in the marginalia of life. And our combined stories meet in the margin in several ways that are important to reading this book and to understanding her story.

After many deep conversations, my mother and I came up with some categories of marginalia that are important to how we live and to how this story is written. 

All of these categories are offered as overarching concepts with some concrete implications. As we see it, the marginalia of Karen’s life story, and of our storytelling, include but are not limited to the structures in and around the main text and are summarized below. We will unpack these textual features in more depth in the following sections, in hopes of helping the reader be as ready as possible for the adventure of reading her story.

  • Headers: The text includes headers that indicate the speaker. Sometimes the speaker is Karen and sometimes the speaker is Anna. And sometimes the speaker is a unique mixture of Karen’s and Anna’s perspective mingling with each other.
  • Middle Voice: The prose style is intended to bring forward as much as possible something linguists call the middle voice. In the middle voice, the speaker is neither wholly active nor wholly passive, but somewhere in the middle. An example of middle voice prose is the story tells itself. The story both does and receives the action of the telling.
  • Translations: The text also includes translations of significant words from Norwegian to English and from English to Norwegian that are important to telling the story.
  • Questions: Questions are posed to the reader along the way to engage and inspire interactivity between the authors and readers.
  • Story Sections, Timelines: The story will be broken into three Acts marking three periods in Karen’s life. Additional timelines will serve to help ground our nonlinear storytelling in linear time and place.
  • Image Descriptions: Image descriptions and other access features are aimed at making the story accessible widely.
  • Doodles, Illustrations, Pictures, Videos, Food Art: Images and sounds are added to give the reader a more immersive experience of the story.
  • Sidebars: Sidebars throughout will offer historical and social context going on in the wider sphere at different times in Karen’s life journey. 
  • Diagrams: Diagrams will periodically offer interpersonal context, mapping the relationships in Karen’s story.
  • Definitions: Definitions of concepts and ideas will be used to bring us together and go deeper in the meaning of Karen’s life.
  • Footnotes: Data and references will create a bridge between Karen’s marginalized story and more mainstream parts of her experience and world.

As you read this story you will encounter a number of flourishes in our writing and storytelling style, many of which will be linked to the conceptual frameworks of the marginalia, as well as offering concrete learning aids. At any time when you are reading the story, you can come back here to review the meaning that we sense is embedded in these marginalia. We also hope that these marginal notes and embellishments are fun and helpful in making the journey of this story more vivid, interesting, interactive, and honest.
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~ Karen ~

Have I ever told you that when I read texts as a younger person I would mark places I wanted to come back to with the letters NB in the margin, meaning nota bene, a note to myself to take special attention to that part? And then another little memory that comes back to me right now . . . this guy, Michael Avenatti, used to be on the news a lot because he was the one who dug up the story about the hush money Trump wanted to pay to keep a woman from speaking up about sex Trump had with her during his presidential campaign. So Avenatti, who was on the news a lot, used to say something that was fun for me to hear. He would make a point and then finish by saying "basta." It means period or end of story or can’t be argued with, something seriously ending or over. And that word is used in Norwegian, too. So that was fun for me to hear.

~ Anna ~

The marginalia of beginning and ending and <pausing> beginning again.
~ Karen ~

<laughing> Yes.
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Introductions (part 5/5)

6/12/2021

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~ Karen ~

On YouTube recently, I enjoyed watching a conversation between Judy Huemann and two people who are part of the National Center for Learning Disabilities. The video is posted below. The conversation and Judy's perspective is helping me know where to start and where I’m going with this project. The whole video could be watched right now before reading on. The video is about 50 minutes long. Or, the video could be skipped for now, and maybe come back to later. I don't think that watching the video is necessary for understanding the rest of this section.
​
[image description: Image of a YouTube video with the title: "A Conversation with Judy Heumann."]

When Judy Heumann talks about a time when we were having to learn even the word discrimination, I really understand that. When I came to the United States, I didn’t have that word in my vocabulary, let alone have the concept in my thinking. Of course now I see and understand that’s what was happening. But I think we still need to keep evolving our thinking about discrimination and we need a cultural lens to help us. 

You know, during my first twenty-seven years, my whole time when I lived in Norway, I did not really comprehend how many privileges I had as a human being, privileges that put me in the center of most of my life situations. My internalized disability oppression overshadowed my sense of self, eclipsing many of my other identities and taking me away from an ability to use my privilege responsibly. I was strongly identified with this early experience of betrayal by my world — a world that stopped welcoming me to the planet at age three. 

At the same time, I grew up in a place that was very white and there were few times when racism was explicit. Later when I told people that disability and race were equivalent and people responded with anger, I was confused. I didn’t understand what I didn’t yet understand. Because I had relatively few tools and opportunities to learn about racism growing up in Norway, I only knew how to understand my own experience of being harmed by the world. But I did sense early on that something was not right. I remember thinking Why am I so unhappy? But I didn’t believe that something was wrong with how I was being treated. I thought there was something wrong with me.

In Norway, I thought you were either part of the world or you weren’t, and in many ways, I thought that I was the second one. When I came to the United States I began to understand what it meant to be marginalized. It was really a time when I was discovering the margins, even though I had already been living in them. I woke up more. And I lived in and traveled through many margins with more awareness and respect for how those places took hold in myself and in others.

I had this idea that it was important that I was experiencing my early, pervasive unhappiness, this sense that something was wrong, in two different cultures. I had the audacity to think that culture mattered. Culture happens on many levels, including intrapersonally, interpersonally, and societally. And we need to understand concepts like discrimination and marginalization on every level of culture so that we can get a full picture of ourselves.

I can now see that once I started living in the margins, living with the framework of being marginalized as a way of understanding my experience, I was quickly able to see the margin as bigger than me, something outside of and surrounding me — around and beyond my individual identity as a marginalized person. It has since occurred to me that every individual person is a copy of the universe. We all have edges and margins and centers within ourselves. And I believe that what you and I are doing now, Anna, telling our stories to each other, writing down my oral history with your creative help — what we’re doing is overlapping our margins, taking turns seeing how our own centers shift in the dance of relationship. We can invite more people, the readers, to come and overlap their margins with our margins. To me, it’s a different way of thinking about margins and this whole project. It comes to me as a new framework where people are never all inside or all outside the margin, but both places, many places all at once. Being part of the margin is inhabiting many places.


But those places aren’t a given either. Some parts of my identity are never going to be clear to me unless I do something more about looking at them critically, like my whiteness and my class. And I can see now how taking responsibility for these parts of my life is honest and important to me. I see myself being more responsible for what I do with my life and less taken down by the world. I am changing how I see myself in these ways by telling myself my story again, but this time with new ways of thinking about what the margin even is. And I see so clearly the way that cultural studies has helped me get to this place in my thinking.
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[image description: An image of a YouTube video titled: "Karen responds to Judy's conversation with the National Center for Learning Disabilities (part 1/2)."]

[image description: An image of a YouTube video titled: "Karen responds to Judy's conversation with the National Center for Learning Disabilities (part 2/2)."]

I also agree with Judy Huemann’s idea that our movements are still going and unfolding and that we need to keep thinking about and pushing for what is next, which means that we need to understand more about where we’ve been and where we’re at now so that we can keep thinking about where we need to go next. Anna is helping me think about the ways that academia managed to silence me by breaking me down. And the ways that I don’t have to take all of the responsibility for quitting, but can be sad and hurt and angry and honest and brave in speaking up now about the ways that life and ableism have been hard and disappointing and cruel to me, leaving me in the later years of my life cast out again.

There are social and cultural forces that create centered and marginalized experiences and spaces. That is a historical fact that continues today. But how the margin and the center and the edge live inside us are not fixed realities. My center might be your margin. Then again, even when you push me into your margin, pushed out of your buildings and laws and art, I will find a way to make that space my center, and in time, I will use my power to put you in my margin. And any of these situations might only be true today. Or in this location, and for a specific reason. Or this pattern might endure. But no one story tells the whole thing, and my story is one part of the way the world has marginalized people, one part of many, many people’s marginalizing ideas, and that’s maybe why it’s important for me to shake things up and make my presence known to as many people as I can.

My name is Karen. I am a part of disability history. I was here. I was on this planet. I left a mark. And I want the world to know and remember that.

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Uncovering Hidden Histories of the Americans with Disabilities Act (ADA), 30-Year Anniversary Reflections and Celebrations

9/17/2020

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In 2020, the Americans with Disabilities Act (ADA) turned 30 years old. Post-Polio Health International asked Karen to contribute her reflections on the anniversary of this legislation passing. 


~ Karen ~

The future of the ADA depends on all of us. Right now, we need our collective voices to tell more of the truth about how far we’ve come and what still needs to be done. That means we have to be able to see what the ADA has actually meant for disabled people in their complicated everyday lives. Personally, I’m weary, and I’m hopeful. It makes sense that my feelings about the 30th anniversary of the ADA are mixed; for me, the ADA has been a mixed bag.
​


You can read the full article here.
​
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[image description: Karen in front of Violet Hall at Northeast Missouri State University, now Truman State University, pictured on a flyer for a new program at the university that Karen proposed and advocated for and that was designed to support university students with disabilities, c. 1990]

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Introductions (part 4/5)

7/10/2020

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~ Karen ~

I’m not flowery when I write. I also want to start there, Anna. I think being plain is the best way I can stay honest in telling my story.

​
~ Anna ~

​<laughing>

In the future, I will work on reining in my flowers.

Your turn.


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[image description: Karen and Anna in St. Louis c. 2015]

~ Karen ~

Ok, so my name is Karen.

I also love carbonated water.

And ok yeah, you got a lot of the rest of that right, Anna. I love what you write. And I love that we write differently. 

I agree that our stories are connected, and I see how telling my story to you and to the world can be part of what I need to do and part of your creative life both, as you say, at the same time. 

I have loved watching you find your way as a creative intellectual through your life. And I think it’s great that we both wrote something for the Oral History Review. We both found a home there for something important that we each had to say. We didn’t try to make that happen. But somehow we met there on our own. And I love that you and I have that together.

And it’s important for me to speak to you directly here, Anna. I know that you are speaking to the reader in your introduction. But I am speaking to you. 

In the Oral History Review essay that you published with your grad school friend, Claire, you said that your intention in bringing oral history and creative writing together in your studies was — let me get this exactly — to “explore possible overlaps so that we might benefit from a place of new understanding not yet imagined.” Yes. That’s what you and I are doing. We are trying to understand something new together that can only be understood through our coming together — our overlaps.

We are overlapping our thoughts and feelings, together exploring this space between us, here where you have largely taken the role of creative pioneer — or at least the person making all the Google docs for our writing drafts. You have started all of our to-do lists, made outlines, put interview notes with me into the different sections of our writing project, helped shape the telling of my life story, and planned a way to share our co-written story to a wider audience. You are looking into the dimensions between us and creatively interpreting what you see, so that others can see too.

I am taking another role — finally telling my story, my whole story. In the Oral History Review essay that I published, I challenged oral history researchers and readers to include oral histories by people with disabilities, because I thought that to form a full picture of social history we needed to include disabled people. 

In 1995, I argued, “Compared to the impact of historical studies of the Black freedom movement and the women’s movement, however, the disability rights movement has so far had little effect on historical scholarship.” A quarter of a century later, I still believe there is work to do in capturing the history of disabled people. I know because I am just now telling my story.

I don’t think of my story as the best story to do this — well, I didn’t until you and I started talking about writing my story down. You helped me see that I do want people to read my story and think about how I am a disabled person who needs to be part of world history. Many disabled people have told their stories. Many  more have not. Some of my friends have written books. Many who need to be remembered haven’t yet. I have been hoping they would, encouraging them. And I think I need to finally listen to myself.

But when I try to think about a more granular impact that I want to have by telling my story, I struggle to think about the legacy I want to leave. You know, I find myself wondering What did I contribute just from having been on earth? I doubt my impact. I still often feel that I grew up in a very small, narrow setting, and that I spent the rest of my life being too timid because of my upbringing. I understand that this doubt is exactly the symptom of the trauma of my childhood, and I am working with my therapist and with you to see beyond that trauma. And it is hard for me. The church and my parents’ religious and cultural convictions were my boundaries with the world for so long, decades. Even half a century after I left, many days it seems to me that all I did was run away from those problems. I still worry that I wasn’t very brave.

But I know I did do something. I have a poem somewhere, Anna. I need to find that. It’s in English. It’s about how my father’s house had a closed door, and I had to use my free will to decide to go out that door. And once I got outside, the world did not look the way it had looked through his windows. I say it very well in that poem. I need to find that somewhere. Oh, yes, here it is.

The doors in my Father’s house were open to go and come in.
The windows, I often wonder what they could have been.

You see, when I finally chose to leave through my father’s door,
The world didn’t look at all like the windows had looked before.

So, yes, I see now that part of what I want people to understand is how I struggled as a disabled woman to leave my parents’ world behind in order to see the world more like the way it really was. And that’s a challenge for every person, to grow up and be themselves. Everyone becomes an adult in part through finding their own way, their own place in the world. I got big support for that when I found the disability rights movement, where I found what I considered to be the right side of history. 

But I do not feel that I stand out too much. I am part of a big movement. And that’s all I think I need or want. And the history of that movement is what I would like to help people see in my story. Though I also understand better now how my history, like other disabled people, with all the different parts and intersections is that bigger movement history. 

So yes, Anna, we are both writers here where we overlap, and we are both historians. We are both storytellers and we are connected as family. But I am telling the story of a long life, and you are coming into that story and helping me share it. And I am bringing my story forward with you because your creative energy and understanding of me is also a part of my story. And you’re helping me see new things about my life in new ways. You’re helping me have more understanding of myself and how I was caught up in a lot of big things in life. You’re helping me see more of myself, and that is helping me be kinder to myself and more responsible to the world. Telling my story is a responsibility I have to myself and to the world. It’s a responsibility I have to the other people in my life who were marginalized, and came up with that framework of understanding, and built their own world in those spaces, and when I came to this country, gave me a home there.


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[image description: Karen in St. Louis c. 2018]

~ Anna ~

By choice and by circumstances larger than her, my mother has lived most of her life in the margins. And while she has fantasized that the juice of life must be happening in the center, my mother’s own vitality is scribbled all over unblanked leeways and colored-in fringes. She has long been skirting the hems and rolling along surplus liminal shores, inventing the positive areas and structures of her long life even while others shut her out. From the beginning, really, she has been making it up as she went, arguing with the center, and armed with the liveliness of the margin’s own dialect, sensibility, and mystery. And my mother, after all of these years, is still open to inviting people in here to meet her in her marginalized life. And she has learned through firsthand experiences that she is also a traveler in the margins of society, going places where she has had the opportunity and ability to connect with others’ marginalized experiences and creative expressions, using her privilege to bring people in the margins forward, and getting clearer with each encounter that there’s audacity and real love in the people here.

Heck. There is audacity and love in my mother. And in me. We have been dancing around the edges of this project for years. And we’re prudent enough to finally make this shit happen.

In 2005 my mother was asked to submit an essay proposal about her life as a disabled person to possibly be included in an anthology of disability experiences. She wrote me that year and asked me to help her with the writing of that essay. I look back on the edits I gave her, a young twenty-something, and today multiple thoughts race through my head: Why was I being sort of mean? Why was I picking on individual words and not allying myself with her larger framework? Why didn’t I know how to say more about the overall premise of healing and the joy of what she was working on? I understand now, that I was still integrating the lessons she had gifted me by raising me, in particular by choosing to raise me as a Jew. I was still healing my own wounds in my own marginalized places, still making sense of how my privilege fit into the whole person I wanted to be, and one way my process came out at that time was in needing to sound important, to sound like an authority.

Her essay was not accepted to that anthology and was never published. More than a decade later when she reminded me of this, I didn’t remember it right away.

​She tells me that she still feels that the writing was never good enough. In this moment and at this time in my life, I can feel myself racing to mount a defense for her inside my own thoughts.
I see you! I see us! We’re amazing! Why are we both still so unsettled about our place in life?! 

I hate this place where she feels unseen. Where we feel unseen.

I cannot stand this doubt any longer, for either of us. We are out of time. This uncertainty is bullshit. She is a great writer, and so am I, and no internal or external authority can dictate that any longer. I’m putting my foot down. 

I’m putting my foot down, and I’m opening the page. You, reader, are the lucky one.

Come. Meet me in the margin with my mother. We will visit together. We will go through the center of the page, out beyond the edge, and back in to the many margins of a long and good life. There is so much meaning in our meeting here.


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Introductions (part 3/5)

4/15/2020

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~ Anna ~

My mother and I have spent a lot of time over the years reflecting on our differences — the ways we each feel different from mainstream culture. Lately, we have spent more time thinking about and telling stories about how we are the same as many culturally dominant groups. We have been able to talk with each other in this way between us. We have gotten committed to telling the story of the range of privileged and oppressed spaces we occupy collectively. 

It gets murky fast, and overly conceptual. My tendency is to go high up in the clouds. 

I keep committing to the process. 

It feels necessary.

Picture
[image description: Anna and Karen at Karen's home in St. Louis, Missouri, smiling at the camera c. 2018]

Necessary because my story and my history are in a way my mother’s story and history, and this is where I go frequently to look for myself and to find self-understanding. I start somewhere with her, and the creative process of my life was first created literally inside her and also through her love. When I create my story by telling it, I am telling a story that she also had a hand in creating, and this magical space of creation across generations is part of our shared history. That’s why my mother’s story and the way she gives it to me freely and openly continue to feed my creative life and the ways I choose to see and express who I am in the wider context of society.

Necessary, also, because the stories we’ve told to each other about ourselves over the years are always changing. As illustrator Leah Pearlman writes, honesty is the only thing that can keep up with change. Here’s a little honesty about my younger self and how I have held and defined my mother in the past. In my early twenties, I began writing about my family for various graduate school writing projects. I sense that I was not as good at honesty back then, and I’m still working on opening the door to my whole truth. But now I’m stalling. Let me get back to the honest part. This is how I described my mother in the opening paragraph of one essay:

When my mother was three years old she ran through a muddy field and came home with polio. I like to imagine her this way, 1945, rural Norway, north of the arctic circle, a three-year-old child with ridiculously dark brown hair running fast, as fast as her baby legs can carry her — alone — through a field of heather and cloudberries. Coming closer I can almost see the polio fairy dust jump up out of the ground and sting her bare feet. She winces in pain. Her right leg goes limp. At the same time I see that she is no longer a child. Turning fast into an adult, her leg has stopped growing with the rest of her. She pauses in the field for a moment while a large metal brace wraps and buckles around the short leg. But she doesn’t stop for long. She moves forward again, walking now on crutches. Too slow! She pushes forward in a manual wheelchair. Still, too slow. Finally, she surges toward me in a battery-powered chair. I like thinking of my mother as a crippled Norwegian goddess descending from the far north, hitching herself to a star, and crossing the Atlantic Ocean on a winged chariot of metal to find my father in small-town Ohio. 

Necessary, also, because today I am trying again to see more of my mother, to not obfuscate her with my daydreams.

My mother’s names have been Karen Magnhild Nygaard, Karen Nygaard Hirsch, and Karen Hagrup. She was born in 1942. She was born in Norway and immigrated to the United States. She’s white. She’s a cis woman and uses she pronouns. She’s a twin. She is one of four sisters. She is lovingly partnered for many years to a woman, after a long marriage with a man. She says now that she must be bisexual. She got polio when she was three, has grappled with years of post-polio syndrome, and in her older years is navigating wet macular degeneration in both of her eyes. She has herpes and a thyroid imbalance. She has been taking Wellbutrin for over a decade. She is retired and lives frugally on what she has. She has been a teacher, a professor, an executive director, and a founder. She is a writer and an artist. She hates violence in movies. And she loves color and lights. 

All of these parts of her have beginnings that lead to longer stories. And all of these parts of her have been the perfect mishmash all together to feel like she has not just been marginal to society, pushed out of the center, but that instead she comes from somewhere completely other — somewhere beyond the margin. 

For at least a couple of reasons, my mother imagined herself living off the edge of the world well into her twenties. When she was a child she traveled with her father to a Norwegian island called Skorpa where one family lived so that her father could minister to that family. Skorpa means crust. Traveling through stormy, isolated landscapes like these was common in my mother’s childhood. She grew up believing that Norway wasn’t totally part of the world, that the action must be other places. Some of her time spent with her father included traveling to rural homesteads and him showing his daughter and her polio leg off to adherents as testimony of god’s power and mercy. She sensed for many years that her parents already imagined her residing in paradise, not fit for life on earth. Growing up, my mother didn’t have the language of marginalization or an identity as being part of a minority group, something that would put her somewhere on the map, if only at the outskirts. As a little girl my mother understood her place in the world as somewhere not totally in the world. 

Picture
[image description: self-portrait by Karen c. 1962]

But my mother very much lived on earth.

At age twenty-seven she decided to leave the crust of the world behind her. After many years receiving messages that her life belonged to her parents and to god, Karen crossed an ocean, got married, raised two children, and had a prolific career. In the eighties and nineties, my mother was one of the first people to tell the world that disability is a cultural and political experience, not just a medical one. 

Today she often still feels that her voice and contribution has already been forgotten in the wider disability culture. She has a doctorate, offered her own life toward winning through settlement an early legal case under the Americans with Disabilities Act, has met Barack Obama three times in the course of helping him get elected twice, and still often feels unaccomplished. My mother is a female disabled immigrant whose writing hasn’t been published nearly enough, nor as often as my father’s writing has been.

My mother speaks two languages fluently, and sometimes when she opens her mouth she feels like she can’t say anything anyone will understand. She is really good at laughing at herself at times like these, and her own shy but resilient sense of humor, teetering between despair and joy, has certainly saved her and her nervous system from collapse for decades. 

My mother knows things about being outside the in crowd. She knows what it’s like to work incredibly hard to get people to pay attention to you and often have the attention she can get turn into pity or scorn or revulsion. She knows what it’s like to internalize that kind of hurtful attention and end up working hard to hide oneself from others, from the world, from her own self-love.

She knows the unique challenge of trying to make it from the edge of the world into the margins of society. There is a language piece here, and a social and cultural piece, as well. Margin and marginalization were words and concepts that my mother got when she learned English and moved to the United States in her late twenties. She did have access to many advantages and centering experiences as a white European Christian with financial stability, including accessing the Independent Living Movement and other disability rights communities in the United States, which gave her a political and personal context to flourish, to become conscious of her marginalization as a disabled person, and of her privilege as well. Even with all of this access and with all the talk of centering her experience, my mother knows that she may never actually get to the center. The center was not built for her. Frankly, it’s no longer where she wants to be anyway.

Still, my mother asked me to help tell the world the story of her life. She asked me to use my privilege to help center her. I said yes.

I also asked my mother what she thought about the idea of inviting people to meet her in the margin instead. I asked her if there was magic there that people needed to know about, experiences like my Judaism and her disability. I asked her if the margin, after all her years, was a good place. She said yes.

We have made each other think. Hard. And a lot.


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Creative Crossroads

4/11/2020

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~ Anna ~

In the past few years, two of my favorite creative projects, MeetMeInTheMargin.com and PositivelyPolyAnna.com, have gradually found an intersection through
#MindfulHearts illustrations like this one. 

Picture
Originally published at PositivelyPolyAnna.com on 4/10/2020.
[image description: A heart with a metal brace on its right leg sits at a desk typing on an early model computer. Text reads: "Disability scholars are beginning to call for a change in the 'constricted and myopic thinking that has long characterized...the study of disability.' Some claim that it is comparable to 'confusing gynecology with the study of women in society, or dermatology with the study of racism.'"]

This collection of cartoons depict moments from my mother's essays, journals, letters, and other writings that she and I are diligently collecting into a co-authored memoir of her life. I'm excited for this creative union to grow and flourish, and to see what we dream up together next.

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    The Project

    An adventure in homegrown oral history making, Meet Me in the Margin takes the reader on a ride through radicalized Norwegian, American, disabled, mentally ill, queer, polyamorous, interfaith, and intergenerational landscapes, weaving together stories of love and transformation between worlds and across psyches.

    Read more . . .


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    Authors

    Karen Hagrup

    ​physical disability
    immigration

    bisexuality

    ​As an anti-Skinnerian educator and mother, a disability studies pioneer, and a staunch Obama supporter, I have spent my life fighting for people's rights and joy, my own included.


    Read more . . .


    Anna
    ​Hirsch

    mental illness
    interfaith

    polyamory

    As a feminist movement writer and as a relationship-focused psychotherapist, 
    I have come to believe deeply in the power of intersectional, intergenerational, joy-focused storytelling as a powerful act of resistance. 

    Read more . . .


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    ​by Karen Hagrup.
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