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
[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.
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.
[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
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
[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.
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.
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.
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.
[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).
[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.
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.
[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.
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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