I was 35 weeks pregnant when I flew from Rhode Island to New Mexico in order to attend the AROHO Women’s Writing Retreat back in 2011. Many people were concerned about me flying alone to spend a week at the high elevation of Ghost Ranch, New Mexico, when I was so close to giving birth. I also wouldn’t have a reliable cell phone signal there, and the nearest hospital or birth center was hours away. I listened to my body and I took that risk because sometimes, we are faced with risks that we absolutely need to take, and it’s a personal, private choice that no one else can make for us.
I needed the opportunity of that retreat for my writing, and I needed it as one last trip before my entire life was about to change with the birth of my first child.
The retreat was amazing. I made contacts with other writers and with a wonderful literary agent who has given me a lot of guidance with various writing projects throughout the past two years.
I gave a presentation, called a “Mind Stretch”, while at the retreat. A lot of people enjoyed it, so I am happy to post it here (because I am currently still in the process of my latest YA novel, and I’ve got to get back to it):
I’d first like to begin by saying that most Deaf people who also speak American Sign Language and are part of the Deaf community, which has its own culture revolving around the sign language of its members, do not view deafness as a disability at all. The reason for this is that deafness is not something that limits any of us physically until we encounter a hearing person trying to speak to us. We can all do everything that a hearing person can do and everything we need to survive. In a sense, deafness is like perpetually living in a foreign country where most of the people around you do not speak your language.
I also believe that deafness becomes a disability when a deaf person chooses to be in an environment where they are surrounded by hearing people conversing and expecting them to be part of a conversation. In this instance, deafness is literally a disability because the deaf person cannot follow a conversation. I don’t think it’s possible for a deaf person in these circumstances to ever feel equal to the people around him or her.
In the deaf artist, Susan Dupor’s, painting, Family Dog, she is in the position of a dog under a coffee table while the rest of the hearing people in the room have blurry faces to signify that they are speaking things she cannot understand. Her deafness makes her feel lower than everyone else, like a pet dog that sits on the floor with their tongue hanging out. I’ve often felt this way in groups of hearing people, and I know this is a component to my lifelong attachment to animals and dogs especially. This feeling drove Susan Dupor to paint the scene exactly as she has felt it happen to her, and for me, this feeling has prompted me to fly to India and help stray dogs and to train my own dog as a Hearing dog and companion. I literally do not feel complete without my dog or any dog by my side, and it’s because of how marginalized I’ve felt growing up and going deaf while everyone just kept talking.
As a side note: I wanted to bring my Hearing dog on this trip, but my current disability of being pregnant has basically made me decide to make this trip on my own and have as little as possible to worry about. Although my dog helps me to feel more comfortable and equal in groups of hearing people, he is still like a child in many ways because I haven’t yet been able to train him to feed himself or take himself for a walk or carry my bags for me. So, it was easier to leave him home.
The painter, Frida Khalo’s, disabilities greatly influenced her self-portraits. One example is her painting the Broken Column:
Carole Maso, in her cross-genre work Beauty is Convulsive, The Passion of Frida Khalo, explains:
“Three concerns impelled her to make art,
she told a critic in 1944:
her vivid memory of her own blood flowing during her childhood accident,
her thoughts about birth, death, and the conducting threads of life,
and the desire to be a mother.”
Frida was never able to be a mother and suffered through three abortions before she stopped trying.
Anne Finger, in her short story Helen and Frida, imagines a meeting between Helen Keller and Frida:
“So now the two female icons of disability have met: Helen, who is nothing but, who swells to fill up the category, sweet Helen with her drooping dresses covering drooping bosom, who is Blind and Deaf, her vocation; and Frida, who lifts her skirt to reveal the gaping, cunt-like wound on her leg, who rips her body open to reveal her back, a broken column, her back corset with its white canvas straps framing her beautiful breasts, her body stuck with nails: but she can’t be Disabled, she’s Sexual.”
I think what Finger means here about Frida being “Sexual” not “Disabled” is how Frida has painted her perfect breasts despite all the nails sticking into her skin. She is emulating her sexuality, and was known for her many affairs with both men and women. I find myself wondering if Frida is actually hiding behind her sexuality and using that as well as her art as a means to escape the feeling of being disabled.
In a poem by Kenny Fries, Excavation, he is focusing on the scars that mark his disability, but he is also digging deeper, trying to figure out who he was before such scars were made. His poem reads:
“Tonight, when I take off my shoes:
three toes on each twisted foot.
I touch the rough skin. The holes
where the pins were. The scars.
If I touch them long enough will I find
those who never touched me? Or those
who did? Freak, midget, three-toed
bastard. Words I’ve always heard.
Disabled, crippled, deformed. Words
I was given. But tonight I go back
farther, want more, tear deeper into
my skin. Peeling it back I reveal
the bones at birth I wasn’t given—
the place where no one speaks a word.”
We are left with the questions:
Where do we end and our disabilities begin?
Is it even possible to separate ourselves from our disabilities?
I’d like to call up the concept of disability as something that everyone faces at one point or another in their lives. We all can’t physically do something we want to do at some point, whether it is due to pregnancy or a broken leg or arthritis or old age. I’d like to present disability as something people should be more accepting of rather than marginalizing because of the fact that disability is part of being human.
We live in a society that does help each other and has moved away from Darwinism in the sense that, in the animal world, a disabled animal is a target, it’s something that will die much faster than any other animal in its herd or its pack, and no one will help it. Everyone is focused on their own survival and a disabled creature is a liability to the whole pack if they all try and help it. With humans, we have created a different sort of society here where disabled people often live as long as other people. We do help each other. But I think its hard for us to do this, somewhere inside we are all still animals, and disability is often a social stigmata because its something no one wants to face or experiences for themselves.
Chistopher John Heuer has written a poem called Visible Scars, which details his desire for deafness to be as well-known and as the persecution of black people. Deaf people are just as marginalized as other minorities of America and in other countries, but we look just like everyone else and our language is silent. In many ways, the discrimination against us happens privately, but it’s understandable that Heuer wishes it were more public. I’ll read and sign his poem:
“In my dream the old black woman
said My but ain’t you an uppity nigger
for a white boy,
and threw a copy of the Americans with
Disabilities Act at my chest.
She said What whip were you ever under?
What land did you ever lose?
Then she showed me her back, tugging down
the heavy brown sweater that protected
her oppression. Her scars were black
in the way that skin visibly shudders
when ripped open, black in the way
that melanin reasserts itself in fury.
I reached for my ears but could not pull them off.
I felt in my ears but nothing was there.
I wished for scars like hers.
I wished to stand up and scream Look!
Look, look, look!
I wanted proof to show her, I wanted
centuries of songs to the Lord, I wished
for a hearing overseer
with a whip, I wished for rows of deaf men
in the cotton fields, signing in the sun.
I wished for the hearing man you could see,
so that I could point and shout
Look, look, look!
She said Don’t bring your anger here to me,
white boy, and pointed at the door.
I left the interview with a deaf man’s guilt,
Because I had no proof.”
Disability, for me, can often be frustrating to deal with (especially in groups of hearing people who are not trying to slow down their conversations, or who are trying to over compromise and slow things down so much that I can feel myself holding everyone back)…but if I was not gradually going deaf, I don’t believe my imagination would be as powerful and my writing wouldn’t be the same either.
I’ve learned to use my deafness as a way to reach out to people through both writing and art, as many other deaf and otherwise disabled artists have also done. I think its something everyone can use, regardless of how obviously disabled they are. Think of disabling emotions like fear, anxiety, paranoia, pain, depression…these are disabilities that begin in the mind or the heart but they can easily extend to our bodies… most people have these feelings at one point or another and as writers – we need to be able to tap into these universal human emotions in order to make our characters accessible. So in a sense, I feel that disability is the key to making a character we are writing about more human. It’s about making sure there is conflict in a story or a poem – because without some sort of tension, your reader isn’t going to be interested or feel connected to it. Disability becomes not just how we connect but WHY we connect.
It’s only when you consider a person or character’s disabilities – the things they can’t do – that you are able to figure out what things they are able to do best and what might be the gift or lesson you can learn from their disabilities. Humans often find the strongest communities through the things that they struggle with – like deafness or blindness or depression, or addictions or writing – they come together in support and compassion for each other and are able to help each other really figure out what they can do and where their strengths are.
I’d like you all to consider your characters and fellow humans this way as you write and live. See someone’s disability – but also look past it to find their talents as well, and connect their strengths and weaknesses with your own. We aren’t whole without this balance of disability and ability.
John Lee Clark is a deaf/blind writer and he illustrates the beautiful community that Deafness, other disabilities, and writing, CAN PROVIDE if we are able to reach out and connect with other people. I’d like to read and sign this poem of his to you in closing:
I miss all of the long goodbyes
of my parent’s guests
taking their leave by not leaving
when it was time to go. Someone would sign
Better go home we but hours would pass
around our round table—
the bowls of our hands offering
confession after confession
assuring us that we are we—
before anyone stands up.
Then others, sighing, will stand up
slowly and slowly walk
through our house, pausing
where the walls offer stories,
reasons to stay longer
and touch more things with our hands.
I remember how long,
how wonderfully they stood
unwilling to open the front door,
signing away with warm faces
and hugging goodbye again
before going gently into the night.
My family would huddle to watch
their cars’ headlights roll away
but pause to flash in the Deaf way,
waving goodbye to our house.
How we children dashed inside
to light switches for our house
to wave back goodbye,
light to light bright in the night!
Now that I am grown
and have my own family, do come
for a visit but do not leave
when it is time to go. Sign, do sign
Better go home we and our hands
will make time go suddenly slow.”