~ 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.
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.
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.
[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.
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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