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.
<laughing>
In the future, I will work on reining in my flowers.
Your turn.
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.
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.