Growing up in southwestern Virginia in recent decades, poet Molly McCully Brown often passed by a state institution in Amherst County that was once known as the "Virginia State Colony for Epileptics and Feebleminded."
Since 1983 the facility, which was founded in 1910, has been called the Central Virginia Training Center, and it is now a residential home for people with various intellectual disabilities. But in the early 20th century, the place Brown now refers to as "the colony" was part of the eugenics movement taking hold in the U.S., and a variety of treatments now considered inhumane were practiced there — including forced sterilization. Brown, who has cerebral palsy, notes that had she been born in an earlier era, she might have been sent to live at the institution herself.
"It is impossible to know that for sure," she says. "I can look at my life and look at my family and look at my parents and think, No, never. That never would have happened. But I also understand that if I had been born 50 years earlier, the climate was very different."
She hopes to give voice to those early generations of residents, in her book of poetry, The Virginia State Colony For Epileptics And Feebleminded.
For Brown, the themes of disability and poetry have been constant throughout her life: "In my life, there has always been my body in some state of falling apart or disrepair or attempting to be fixed, and there has always been poetry. And I couldn't untwine those things if I tried."
On seeing the buildings and grounds of the old facility
It was incredibly moving and incredibly powerful. The place is interesting because it is still an operational facility for adults with really serious disabilities, although it is in the process of closing. But like a lot of things in Virginia, it was initially built on an enormous amount of land. And, so, a really interesting thing happened, which is that as the buildings that were originally part of the colony fell into disrepair, they were largely just moved out of — and new buildings were built on accompanying land, but those original buildings were not necessarily torn down. So the place itself is this really strange combination of functioning facility and ghost town of everything that it has been. I've never been in a place that felt more acutely haunted in my life.
On how some people assume her physical disability means she also has an intellectual disability
We do have a strange tendency in this country to equate any kind of disability with less intellectual capability and with even a less complete humanity. Certainly as a child and as a teenager — and even now as an adult — [I] encountered people who assumed that just because I used a wheelchair, maybe I couldn't even speak to them. I often get questions directed at people I'm with, as opposed to me, and that's a really interesting phenomenon.
On the connection between poetry and theology
Both poetry and theology for me are about paying attention to the world in a very intentional way, and about admitting a mystery that is bigger than anything that I rationally understand. ... I think poetry has always been for me a kind of prayer. So those things feel very linked for me. And, again, poetry does feel like the first — and in some ways best — language I ever had for mystery and for my sense of what exists beyond the world we're currently living in.
On how Catholicism has helped her accept her body
One of the things that I find so moving about Catholicism is that it never forgets that to be a person is inherently and inescapably and necessarily to be in a body — a body that brings you pain, a body that brings you pleasure, a body that can be a barrier to thinking more completely about your life and your soul — but [that it] can also be a vehicle to delivering you into better communion with the world, with other people and to whatever divinity it is that you believe in.
What Catholicism did for me, in part, is give me a framework in which to understand my body as not an accident or a punishment or a mistake, but as the body that I am meant to have and that is constitutive of so much of who I am and what I've done and what I hope I will do in the world.
More and more ... I've come to see my body as a place of pride and potential, and as something that gives me a unique outlook onto the world. And I'd rather that, I guess, than be infuriated by it.
On her twin sister, who died shortly after birth
She lived about 36 hours after we were born. ... It's a phenomenon in my life that I have not a lot of rational explanation for, ... but it is true that I miss my sister with a kind of intense specificity that has no rational explanation, and that I feel aware of her presence in this way that I can't exactly explain or articulate, but which feels undeniable to me. ...
I do think that that sort of gave me no other option than to believe in some kind of something beyond this current mortal life that we're living. Because what is the explanation otherwise for the fact that I feel like I miss and I know this person who only lived a matter of hours? And for the fact as much as I know that she is dead and is gone in a real way, she doesn't feel "disappeared" to me.
On how her physical disability and her poetry are intertwined
I think the easiest way I have of describing it is I have two [early] memories. ... One of them is of sitting on a table in a hospital room in the children's hospital in St. Louis, choosing the flavor of the anesthetic gas I was going to breathe when they put me under to do my first major surgery. I was picking between cherry and butterscotch and grape. And the second memory that I have is of my father reading a Robert Hayden poem called "Those Winter Sundays."
Roberta Shorrock and Therese Madden produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. During the first half of the 20th century, many people in Virginia deemed mentally or physically defective were confined in the Virginia State Colony for Epileptics and Feebleminded, a government-run residential hospital where they were sterilized to prevent them from creating more people like themselves. The facility is now dedicated to training the cognitively impaired.
My guest, poet Molly McCully Brown, was born in 1991, grew up near this facility and often wondered if she would've been deemed defective and confined in the colony had she been born a few decades earlier. She has cerebral palsy, a neurological disorder that affects body movement and muscle coordination. Her new collection of poems, "The Virginia State Colony for Epileptics and Feebleminded," imagines what life was like in the colony. The poems were described in a New York Times book review as part history lesson, part seance, part ode to dread - beautiful and devastating.
As the daughter of two novelists, she grew up immersed in books. As we'll discuss later, Molly McCully Brown converted to Catholicism three years ago, although she describes her relationship to the church as uncomfortable. She's at work on a collection of essays about disability, poetry, religion and the American South.
Molly McCully Brown, welcome to FRESH AIR. I love your poems. So how often did you see the former Colony for Epileptics and Feebleminded when you were driving around your home in Virginia?
MOLLY MCCULLY BROWN: You know, I drove by the entrance to the colony practically daily when I was a child and a teenager. But I never went inside of it until I was in college and home in Virginia from California for the summer, and starting to think about the Virginia landscape. And I took a kind of impromptu trip inside with a friend. So I'd driven by this place. I'd known about it for years and years - for my whole conscious life, basically. But I'd never seen it up until that point.
GROSS: What feeling did you get when you were inside?
BROWN: It was incredibly moving and incredibly powerful. The place is interesting because it is still an operational facility for adults with really serious disabilities, although it is in the process of closing. But like a lot of things in Virginia, it was initially built on an enormous amount of land. And so a really interesting thing happened, which is that, as the buildings that were originally part of the colony fell into disrepair, they were largely just moved out of. And new buildings were built on accompanying land. But those original buildings were not necessarily torn down.
And so the place itself is this really strange combination of functioning facility and ghost town of everything that it has been. And so I've never been in a place that felt more acutely haunted in my life.
GROSS: So I'd like you to read an excerpt of the opening poem from your book. This is the part of the poem where you're driving past the building that used to be the State Colony for Epileptics and Feebleminded. You're driving past it, and you're thinking about the people who live there. You're thinking about what their lives have been like. And in this second part, you're also thinking about what it might have been like had you been forced to live there, as you might've been if you were born just a few decades earlier.
BROWN: Mmm hmm.
GROSS: Would you read it for us?
(Reading) I am my own kind of damaged there, looking out the right-hand window - spastic, palsied and off balance. I'm taking crooked notes about this place. It is the land where he is buried. The place she spent her whole life. The room where they made it impossible for her to have children. It is the colony where he did not learn to read but did paint every single slat of fence you see that shade of yellow, the place she didn't want to leave when she finally could because she'd lived there 50 years and couldn't drive a car, or remember the outside or trust anyone to touch her gently. And by some accident of luck or grace, some window less than half a century wide, it is my backyard but not what happened to my body.
GROSS: Do you think you would've been there, had you been born decades earlier?
BROWN: I mean, it is impossible to know that for sure, you know? And I can look at my life, and look at my family, and look at my parents and think, you know, no, never. That never would've happened. But I also understand that if I'd been born 50 years earlier, the climate was very different. The understanding of disability was very different. And what happens to people who are born with severe disabilities was a very different thing. And I think it is certainly a possibility. And that possibility is absolutely one of the things that led me to write the book.
GROSS: So when you were growing up with cerebral palsy, what were the assumptions made about you and your cognitive abilities when you were a child?
BROWN: You know, I feel very lucky that I grew up with parents who were phenomenal, and fierce and insistent advocates for me. And so who never let anyone assume that I was less cognitively capable - or really, less capable in any significant way - because I had cerebral palsy and my mobility was compromised. And they were wonderful about making sure that I was mainstreamed in the public school system as a child and had access to all the right kinds of educational opportunities.
But with that said, I think we do have strange tendency in this country to equate any kind of disability with less intellectual capability and with even a kind of less-complete humanity. And so I certainly, as a child, and as a teenager and even now as an adult, encountered people who assumed that just because I used a wheelchair, maybe I couldn't even speak to them. I often get questions directed at people that I'm with, as opposed to me. And that's a really interesting phenomenon.
GROSS: So the assumption that some of your poems are based on is not only were the people in this colony considered unfit to reproduce, therefore they were sterilized. It was assumed, in some ways, that they were, like, the outcasts of God. And that's why they were, quote, "defective."
So you have several poems that relate to faith, and religion and the people who are living in this colony. I'd like you to read one of those poems. It's called "The Convulsions Choir." And this is - I'm going to ask you to read an excerpt of that poem. Would you introduce it for us?
BROWN: Sure. So this poem is called "The Convulsions Choir." And it's from the point of view of an imagined colony patient who is epileptic. And I'm just going to read the very first part of the poem, which takes place in the colony's chapel.
(Reading) They did not build the church for us. I overheard one night nurse talking to another. They meant it for the staff, as a refuge from the stench, the idiot and the insane. They meant, you will need God more than ever in this place. After all, we are a whole host of reasons to stop believing in anything. I am the worst thing the reasoned world has wrought.
GROSS: Is that poem based on things that you learned in researching the colony, that the church was really built for the staff and not for the people who were permanent residents of the colony?
BROWN: I don't know that I ever came upon a sort of direct statement of that fact. But what I did come upon again and again was a kind of understanding that was pervasive in the colony and in the eugenics movement in the '30s, at the time that these poems are set, that the people who were colony patients, colony inmates, were somehow subhuman, somehow not fully possessed of meaningful inner lives and meaningful consciousnesses that were developed to the same extent as, you know, somebody who was considered not defective by the times of society at that moment might have been.
And from there, it felt like a really kind of easy conclusion for me to imagine that these spaces which are about the kind of cultivation of one's inner-life, of one's soul, if you want to call it that, of one's relationship with whatever higher power one might believe in couldn't have and wouldn't have been imagined for these patients but did exist on colony grounds.
And so from there, I kind of extrapolated to this point where I tried to imagine, OK, if you don't really believe that these patients are possessed of a complete inner-life and are possessed of a sort of capacity to be concerned with their own soul, then who are you building a church for here, and why?
GROSS: You have another poem that's written from the perspective of a priest or a minister at the church in the colony. And I'd like you to read an excerpt of that one for us and to...
GROSS: ...Introduce it as well.
BROWN: Yeah. So it was important to me in writing the book that I tried to imagine not just the perspectives of women who would have been colony patients but also people who might have and would have worked there. And so this is one of those poems, as you said, from the perspective of preacher, a minister who works at the colony, trying to kind of grapple with his own relationship to the place and the people and the work that he was doing there. And I'm just going to read the first two sections.
"Prayer For The Wretched Among Us." One. (Reading) Always they tell you to go where God calls you. What they don't say is that sometimes God will call you to the wilderness, gesture toward the trees and then hang back and wave you on alone. This is how I wound up granting absolution to low-grade idiots and the worn-out women who turn them over in bed at night and at dawn go home to their own families. Try not to think of ghosts wasting away in the world.
Two. (Reading) You are not supposed to be afraid of sinners. You should take off your shoes and give them to the wretched and the damned. Hold out your hand to every girl, even if she seems more animal, statue or remnant of plague than lost disciple. But do the children of God really lose their eyes in the backs of their heads and swallow their own tongues in church?
GROSS: That's Molly McCully Brown reading one of her poems from her new collection, "The Virginia State Colony For Epileptics And Feebleminded." Molly, let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is poet Molly McCully Brown. Her new collection of poems is called "The Virginia State Colony For Epileptics And Feebleminded." We'll talk more after a break. This is FRESH AIR.
(SOUNDBITE OF KEVIN EUBANKS' "POET")
GROSS: This is FRESH AIR. If you're just joining us, my guest is poet Molly McCully Brown. Her new collection is called "The Virginia State Colony For Epileptics And Feebleminded." The poems are inspired by the institution that was just a few miles away from where she grew up that used to house people deemed to be insane, idiotic, feebleminded or epileptic. Those are the words that we used then. And then they were sterilized to prevent them from reproducing. Brown has cerebral palsy and often has to use a wheelchair. She thinks that had she been born just a few decades earlier, she might have ended up in the colony or been sterilized there.
Molly, you converted to Catholicism a few years ago. You know, Christ's body is an essential part of Mass. The wafer and the wine and Holy Communion is meant to be the body and the blood of Jesus. I'm wondering if it's significant for you that the body of Jesus is such a part of the Mass given that your body has been such a defining trait for you your whole life because of its limitations and because of the pain it's caused you and the attention it gets from people who see you, you know, either in a wheelchair or walking with difficulty.
BROWN: Absolutely. I think one of the central things that drew me to Catholicism in the beginning was how central and significant the body is in the Mass both in terms of, yes, that understanding that Christ body is literally present as part of the service and also in terms of how bodily the Mass is and how bodily the theology is.
I think we have this tendency to think of religion as something which is about leaving the body behind, right? You have a soul. You have a spiritual life that is somehow utterly untethered from the fact that you are a flesh-and-blood person moving around in the world and limited and constituted by your body in all of these unavoidable ways.
And one of the things that I find so moving about Catholicism is that it never forgets that to be a person is inherently and inescapably and necessarily to be in a body, a body that brings you pain, a body that brings you pleasure, a body that can be a barrier to thinking more completely about your life and your soul but that can also be a vehicle to delivering you into better communion with the world, with other people and to whatever divinity it is that you believe in.
GROSS: Jesus was also a healer of the sick. Does that speak to you?
BROWN: Absolutely - I mean I think for me, that's a kind of complicated question. One thing that I found really meaningful as I was going through the process of converting - and I should say that I still - even as a convert, I have an uncomfortable relationship with some things about the church, and I have many questions. And I think for me, being a person of faith is about trying to live with that - inside those questions and sort of, you know, help be a part of making the institutions that I am a part of and believe in the best versions of themselves.
But one thing that I did find enormously interesting and moving as I was converting to Catholicism was this notion that we all have the bodies that we are meant to have and that if and when Christ in the Bible heals the sick, we're to understand it only as a part of doing something that is in some way necessary for the maintenance and salvation of their spirits and their souls.
And so actually what Catholicism did for me in part is give me a framework in which to understand my body as not an accident or a punishment or a mistake but as the body that I am meant to have and that is constitutive of so much of who I am and what I've done and what I hope I will do in the world.
More and more I've come to see - whether I'm in church or in the classroom as a teacher or interacting with people I love, I've come to see my body as a place of pride and potential and as something which gives me a unique outlook onto the world. And I'd rather that, I guess, than be infuriated by it.
GROSS: Could you tell us just a little bit about your condition of cerebral palsy?
BROWN: Yeah. So cerebral palsy is a neurological disorder. And the easiest way to describe it is that it's a little bit like a stroke that happens usually in utero or immediately after birth. And one of the most common causes of the type that I have, which is called moderate spastic diplegia, is oxygen deprivation. And it just essentially results in brain damage, which impairs your gross motor control, your balance and, in my case, results in heightened spasticity, which means that my muscles are really, really tense and really tight. Cerebral palsy is a big umbrella of a disorder. There are people who have cerebral palsy who are affected so severely that it inhibits their speech. It inhibits the motion of their hands. It means that they kind of don't walk at all.
And there are people who have CP, which is the abbreviation, who are really pretty mildly affected and might be a little bit clumsy, have a slight - a gait that looks, you know, slightly other than what you might typically expect. I fall somewhere in the middle of that spectrum. So I walk with a very crouched gait. My balance is very bad. And my endurance is very limited. And that means that I use a wheelchair to walk more than sort of very short distances.
GROSS: So when you were born, you were very premature.
BROWN: I was.
GROSS: How premature?
BROWN: I was born at 27 weeks, which is almost three months premature.
GROSS: And you were born one of a twin.
BROWN: I was. I was an identical twin, yeah.
GROSS: And your twin sister died just a few hours after being born.
BROWN: She died. She lived about 36 hours after she was born.
GROSS: And my understanding is, from reading your writing - is it the concept of soul - of the soul - is especially important to you because you feel like you're still in touch with your sister's soul, that your sister had a soul and there's something of her that lives on and that you are interconnected with.
BROWN: Yeah. It's a funny thing because it is a phenomenon in my life that I have not a lot of rational explanation for - that there is not a lot of language or space that feels right for discussing it in the kind of daily, practical life of being a human being. But it is true that I miss my sister with a kind of intense specificity that has no rational explanation and that I feel aware of her presence in this way that I can't exactly explain or articulate but which feels undeniable to me. And I have my whole life, ever since I was a child.
And so, yeah, I do think that that sort of gave me no other option than to believe in some kind of something beyond this current mortal life that we're living - because what is the explanation otherwise for the fact that I feel like I miss and I know this person who only lived a matter of hours and for the fact that, as much as, you know, I know that she is dead and is gone in a very real way she doesn't feel disappeared to me?
GROSS: So is church this space? And does it provide the language for you to think about things like your sister's soul?
BROWN: It does. For me, church and Catholicism specifically does provide some of that space and some of that language. And I should say that the other thing that provides that space for me is poetry - and that, for me, those things feel very twinned (ph), for lack of a better term and that I think I came to religion, to theology first and largely through relationship to poetry. That has lasted my whole life and has been always the first and best language for me for talking about things that I can't exactly explain or that don't really have a place in the kind of daily, normal life that I'm living.
GROSS: My guest is Molly McCully Brown. Her new collection of poems is called "The Virginia State Colony For Epileptics And Feebleminded." After we take a short break, we'll talk about how poetry connects with her faith and about being the daughter of two novelists. And jazz critic Kevin Whitehead will review a 1968 concert recording by the Bill Evans Trio that's been released for the first time. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross, back with poet and essayist Molly McCully Brown. Her new collection of poems, The Virginia State Colony For Epileptics And Feebleminded," takes its title from the government-run residential hospital which, in the first half of the 20th century, housed people deemed to be mentally or physically defective. To prevent them from procreating, they were sterilized. Brown grew up near the facility and wonders if she'd have been sent there had she been born decades earlier. She has cerebral palsy, a neurological disorder that affects body movement and muscle coordination. When we left off, we were talking about her recent conversion to Catholicism.
Tell me more - how poetry connected you with theology.
BROWN: I think, for me, both writing and reading poetry and experiencing religious devotion are always first and foremost for me, a matter of sort of slowing down and stilling and paying attention and quieting that sort of indignant, protesting part of my heart that says, you know, I'm angry or I don't understand this or I am hungry or I want to be watching whatever bad reality television show is airing right now - that both poetry and theology for me are about paying attention to the world in a very intentional way and about admitting a mystery that is bigger than anything that I rationally understand or bigger than who I am as a person. And I think, you know, poetry has always been for me a kind of prayer. And so those things feel very linked for me. And, again, poetry does feel like the first and, in some ways, best language I ever had for mystery and for my sense of what exists beyond the world that we're currently living in.
GROSS: Your parents are both writers. They're novelists, and they're teachers at Sweet Briar College in Virginia. You grew up on a house either on the campus or just near the campus?
BROWN: I grew up on campus, yeah.
GROSS: Was that a good thing?
BROWN: Oh, it was a wonderful thing. For a bookish, weird child who had to spend a lot of time in hospitals, had to spend a lot of time in physical therapy, found early that her brain was going to be her best refuge and best resource, growing up the children of artists and faculty members on a college campus - I mean, it was like Mecca. I got to go to readings. I got to go to classes. My life was filled with people who took my interest in books and in art and in religion and in poetry seriously from my earliest moments. It was - I could not have asked for a better childhood in that way.
GROSS: And it sounds like you were really serious about writing right at the start. I mean, from reading your essays, it sounds like you were dictating things to your parents before you knew how to write...
GROSS: ...Because you had such a strong urge to write down what you were saying. Like, can you describe that urge?
BROWN: Yeah. I mean, I think the easiest way I have of describing it is that I have two memories, one of which is my first memory and one of which is my second. And I couldn't tell you which one comes first and which one comes second. One of them is of sitting on a table in a hospital room in the children's hospital in St. Louis, choosing the flavor of the anesthetic gas I was going to breathe when they put me under to do my first major surgery. And I was picking between cherry and butterscotch and grape.
And the second memory that I have - very early memory I have - is of my father reading a Robert Hayden poem called "Those Winter Sundays." And so I guess the thing to say is that in my life, there has always been my body in some state of falling apart or disrepair or attempting to be fixed. And there has always been poetry. And I couldn't untwin those things if I tried. But I have wanted to be a writer since I - yeah, since before I could write. I have never really wanted to do anything else.
And I - you know, I can remember discovering a copy of Emily Dickinson's poems in my mother's bedroom at maybe 7 or 8 years old and reading them and, of course, not really understanding them but being drawn to the music and the compression and the strangeness of them and thinking, that. I want to do that. And I'm very lucky that I've gotten to.
GROSS: Are there are a few lines from Dickinson you want to say that meant a lot to you when you were discovering her?
BROWN: Yeah. The soul has moments of escape when bursting all the doors. She dances like a bomb, abroad, and swings upon the hours.
GROSS: What did that mean to you?
BROWN: Oh. I think that, for me, Dickinson was the first poet I encountered who I could see really clearly grappling with the sort of difficult yoke between body and soul and the relationship that they had to one another. And that notion that the soul has moments of escape when bursting all the doors - and there for me you got the soul bursting the bounds of the body. But you also got a kind of magical experience of being alive. And those lines do, I mean, have about them the thing that poetry has - right? - which is that they have not just their narrative meaning. But they have all that great and wonderful sound. You know, the soul has moments of escape when bursting all the doors. She dances like a bomb abroad and swings upon the hours. All those B's, all that swinging sound - the way in which the message of the poem felt so in conversation to me with the way that it sounded and the way that it was on the page. I think I thought, OK, this is my language.
GROSS: My guest is Molly McCully Brown. Her new collection of poems is called "The Virginia State Colony For Epileptics And Feebleminded." We'll talk more after a break. This is FRESH AIR.
(SOUNDBITE OF AVISHAI COHEN'S "GBEDE TEMIN")
GROSS: This is FRESH AIR. Let's get back to my interview with writer Molly McCully Brown. Her new collection of poems, "The Virginia State Colony for Epileptics and Feebleminded," takes its title from the government-run residential hospital which, in the first half of the 20th century, housed people deemed physically or cognitively defective. She grew up near the facility and empathizes with the patients because she has cerebral palsy.
I've been choosing poems for you to read. Would you like to choose one that you would like to read?
BROWN: Sure. I'd love to read one of the first poems in the first section of the book, which is called "In The Dormitory." This is a poem called "Grand Mal Seizure," and it's the first poem that I ever wrote for the collection as I was drafting it. And it's one that - its beginning became, for me, a kind of way of thinking about what I was doing in the collection as a whole and my relationship to this place and these poems. So I'd love to read that.
GROSS: Go ahead.
BROWN: "Grand Mal Seizure" - (Reading) There's however it is you call, and there's whatever it is you're calling to. July, I sew my own dress from calico and lace. August, they take it off me in the colony, trade it in for standard-issue Virginia cotton - not much room for my body in the heavy slip. Maybe that's the idea. For a while, the abandoning was rare. And then it was not and would never be again. Imagine you are an animal in your own throat. The dormitory has a pitched, dark roof and a high porch. We are not allowed outside.
Instead, we go to the window and make a game of racing dogwood blossoms knocked down by the wind. Choose your flower as it falls, and see whose is the first to hit the clay. I beat the crippled girl every day for a week. The trick is to pick the smaller petals. Most nights, they knot the bedsheet in my mouth so I will not bite my tongue. Lay out on the pine floor, rattle your own bones back to the center of the world. In the beds, the smell of kerosene and lye - the girls wake themselves one after another - spasm, whimper, whine. Outside, cicadas; in the distance, the big house lights - another truck comes loud up the road bearing another girl. There is whatever it is you're calling to. There is however it is you call.
GROSS: Thank you for reading that. I think language has so much to do with how you explain ourselves to ourselves and to others. And I'm thinking, like, if you grew up - if somebody grew up in this colony for the, quote, "feebleminded and epileptics," and you were labeled, officially, defective and you were sterilized because you were defective, that you would have to think of yourself as defective. I mean, that's how - that was your official diagnosis - defective.
GROSS: Whereas, like, when you were growing up with cerebral palsy, a condition that might've ended you up in this colony had you been born decades ago, you were given a medical explanation. Here's what happened in your body when you were born, and here is why your muscles aren't typical. Did you think about that a lot when writing the book - how language defines how you see yourself and how others see you?
BROWN: Absolutely. I mean, I think one thing that it's worth saying - you know, I owe a lot to modern medicine and to the medical model of disability. This model that says, OK, here are the things that are, quote, unquote, "wrong with you." Here are the reasons, as far as we know them, that they're wrong with you. And here are the things we can do and are going to try to do to fix you. You know, I've had several major surgeries in my life. I've had a lot of orthopedic intervention. And I am certainly more mobile than I would be without that intervention. And I'm - am grateful for all of that.
And I'm grateful to have had these scientific and concrete explanations for why and how my body works, and my brain works or doesn't work the way that it does. But I will say that it does shape your sense of yourself. You know, the earliest language I had for talking about my body was a list of the things that were wrong with it and a list of the things that people were doing to try to make it like, quote, unquote, "better." And I think that does really shape your sense of who you are.
You know, you come into the world learning to talk about yourself and your body from a place of needing to be fixed. And so you do think, OK, by default, here I am, broken. And here are the ways in which I need to be made better, made more capable. And that is a really complicated set of things to grapple with as a young person. And so I can only imagine how much worse and more pervasive it would have been if the language you were given for yourself was idiot, was imbecile, was feebleminded because you're right. We are shaped by the stories we are told about ourselves.
GROSS: What was that list of words that defined you when you were young?
BROWN: So I knew very early on that I had cerebral palsy. I knew that my specific diagnosis was moderate spastic dysplasia. I knew that I had high muscle tone. I knew that I had a crouched gait. I knew that my fine motor control was impaired, and my gross motor control was impaired. I knew that my balance was impaired. I knew that my hamstrings were especially tight and my heel cords were especially tight. I knew that I'd had a neurological surgery called a dorsal rhizotomy. And I knew roughly what that was. I knew what an orthotic was. And I knew that there were various kinds of them. That language of monitoring, and maintenance, and defect and attempted repair belonged to me remarkably young. What other 5-year-old do you know that can say dorsal rhizotomy?
GROSS: Really (laughter).
GROSS: In one of your essays, you kind of ask the question, when is it appropriate to tell people that you have cerebral palsy, that you're often in a wheelchair? When do you tell a potential employee? When do you tell a potential boyfriend? Like, say you're meeting the person for the first time at a restaurant, and you're already seated. And that person doesn't necessarily know. Has your opinion about that changed over the years?
BROWN: Oh, I think my opinion about that changes every 35 seconds.
BROWN: ...Based on how it is that I am feeling or who it is that I'm interacting with on a given day. I like to think I'm getting better at navigating the question of disclosure. You know, I'm in this kind of complicated space when it comes to that because, obviously, the moment that you see me stand up or you see me walk, you know that I'm disabled. It is absolutely sort of visually unavoidable. But you don't necessarily know if you just see me sitting at a desk in a classroom or sitting at a table in a restaurant. And so there is this sort of initial moment of, OK, how do you disclose? What do you do?
But, you know, in some ways, I think I am helped by the fact that that moment can only be a moment because the moment I want to move, I have no choice but to deal with the fact that my body announces that truth about itself to the world. And learning how to grapple with that, learning what to say about it, learning how to navigate people's reactions to it was a sort of process that evolved over the course of my childhood and my adolescence, and is still evolving as I'm an adult.
GROSS: So when you think back to your childhood, do you think about how your body was weak, your body needed constant repair, but that your mind was strong?
BROWN: Yeah, I mean, I think even - it's so interesting for me now, as an adult and a writer, to think about the kinds of binaries that I instituted for myself in terms of who I was and what was valuable about me and what was wrong with me. You know, I think there's something sort of already problematic when we say, like, OK, you have a bad body. You have a weak body, but you have a strong mind - because, first of all, you know, what does it mean to be weak or to be strong? What does it mean to have a valuable mind? How are we defining that?
I think it is a really - that's still a really fraught and complicated territory that bears the vestiges of this kind of fear about people who were less intellectually capable, who were in some way going to sort of limit the progress of humanity because they were less strong, less good, somehow defective. And I think it's interesting for me to think about how our language about that, our way of thinking about that still carries the vestiges of that history in it. It's also interesting for me because I think I did - and I do, you know, take great pleasure in my capability with language and my ability to read and my love and appreciation for art - all of that was incredibly important to me.
And I definitely did have this pervasive sense of myself as a child as someone who was not physically capable. But that was OK because I was really, really smart. And, of course, the ways in which that had been complicated in my adult life - by my understanding that actually everything that is wrong with my body is a consequence of damage to my brain - so that, actually, the problem, if you want to call it that, is in my head and is the same brain that has delivered me so many of the things that are most joyful about my life, that are most useful and wonderful about who I am as a person. That is the site, too, of so many of the ways in which I struggle. And I think figuring out how to come to terms with that - how to grapple with the simultaneous truth of both of those things - is the sort of ongoing project of my life.
GROSS: Well, Molly McCully Brown, thank you so much for talking with us.
BROWN: Thank you.
GROSS: Molly McCully Brown's new collection of poems is called "The Virginia State Colony For Epileptics And Feebleminded." After we take a short break, jazz critic Kevin Whitehead will review a previously unreleased concert recording by the Bill Evans Trio. This is FRESH AIR. Transcript provided by NPR, Copyright NPR.