Category Archives: disabilities

Recent Book and Movie Reviews to Check Out

Standard

I am very late in announcing the book review I was asked to write for Wordgathering.com because I’ve been caught in the Christmas fog which immediately followed my November Novel Writing Haze.  

where i stand cover

My glowing review of John Lee Clark’s latest work, Where I Stand: On the Signing Community and my DeafBlind Experience was published last month on their site—link HERE—along with some other great stuff, like Raymond Luczak’s Interview with one of my favorite poets ever, Ilya Kaminsky, as well as his review of the all deaf cast Ukrainian movie, the tribe:  

TheTribePoster

I don’t think I’ve ever been made to equally want to see a movie and not want to see a movie at the same time before reading Raymond’s review of this!  Hearing people especially, please read Raymond’s review of this movie before watching it.  It may ruin some of the plot, but really, there’s not much to ruin.  I’m pretty outraged that this is one of the few movies where people use a local sign language throughout the movie.  Though be warned, there are no subtitles and it is in Ukrainian Sign Language, so if you don’t know that, you won’t really know exactly what the people are saying.  I just really hope people realize that this is not an accurate take on the “Deaf experience” by any means (see Raymond’s review for more details).

                                                              ~

So check out Wordgathering, a journal of disability poetry and literature.  And if you want to read some insanely amazing poems that open their doors and draw you inside their world, go out and find Ilya Kaminsky’s book Dancing in Odessa:

dancing in odessa cover

magic, deafness, being divided, and dogs

Standard

(what else happens in my life, besides the intersection of these things?)

I was speaking with a close friend and cousin today about magic: Not the witchcraft kind (not exactly), nor the sorcerer either.  How sometimes, things just all come together magically.  It’s not just the big things that do this, but the little things, too.  Like when I get just enough writing done to go for a run and then cook dinner, and the baby sleeps for just long enough for me to get everything done that I want to get done.  Days occasionally go perfectly.  And there’s so many beautiful accidents that happen in the world.

*

I believe this happens when we are feeling particularly positive, flexible, and open.

When we have nothing against the Universe, and the Universe doesn’t seem to have anything against us.

I think this happens for everyone, though I’m sure there are exceptions.  But THIS—this exact feeling of:

Positivity.  Gentleness.  Awareness.  Friendliness.  Kindness.  Hopefulness.

*

THIS is a GOAL for me.  This is something I try and wake up every day to feel, but of course, I might start days like this sometimes, and other times, I’ll feel an entire aversion to everything having to do with the morning (having to get up, make coffee, walk the puppy, feed the toddler, start working) from the first second I open my eyes (and those days usually go badly, from those first seconds).  Life happens in between these two opposite situations: the positive and negative things that revolve around us throughout our days.  And I think it’s hardest in the middle, divided between opposing reactions, opposing feelings, essentially stuck with a love/hate feeling for the whole world.

*

Deafness does this.

Though more specifically, the kind of deafness I mean is, having spent the first decade or so of life hearing mostly-everything, and then within a decade, hearing a lot of noise, but no words, not anymore.

I hear a lot, but it’s a lot of “nothing”—groaning, yelling, car engines, boat engines, toilet flushes, crying, rushing wind, and my own voice.

*

I wonder if that’s why I still do LOVE the sound of my own voice, and I love to give public readings or tell stories to my child in spoken English, even though I also sign stories to him in ASL.  I love the poetry slams and cafe poetry readings, even though, unless the poet gives me a copy of their reading beforehand, I can’t hear them.

*

I love all these things, but I hate them, too.  I hate them because of the words I can’t hear anymore, and I hate them because they make me feel selfish, they make me feel disabled, and they make me feel divided (between hearing and deaf cultures, two vastly different entities that I didn’t even realize existed before I crossed from one of them to the other, and back, and forth, and back).

*

So what do I do here in this middle ground—this place between the positive and the negative, the two cultures, the love and hate?  I’m not calling hearing positive or better, I’m calling it different than deaf, equally positive and negative on its own.  Just like Deafness.  There’s no path that is better, but being deaf in a group of hearing people feels exactly lovely and awful at the same time.

Lovely, because they are my friends or my family, and awful because they are speaking a language I can’t hear anymore—so it’s not like the English I can speak myself, it’s like they’re speaking Arabic or Mandarin.

I love all the new things I notice because I can’t hear anymore: like new outfits, the look of guilt or sorrow someone’s trying desperately to hide, new hairstyles or the way someone’s standing and what it might be showing of their deeper feelings, or the way the wind is moving over the water or through the leaves.

Some people might think it’s romantic and dreamy to be deaf, and sometimes on t.v., we are shown as this: a dreaming angel, eyes noticing everything and mind constantly thinking about “romantic” things.

And some people think its the most horrible thing in the world: “Oh, my God, you can’t HEAR ANYTHING?  I don’t know what I’d DO without my HEARING!  Oh my, can you actually drive a CAR?!  How do you go to a RESTAURANT?!”

*

But really, my deafness often feels like, every day, I wake up and people have decided to speak a new language, and everyone knows it except ME, and by the end of every day, I think, “Maybe by tomorrow, I’ll understand more of it,” but then tomorrow comes, and it’s a whole NEW language all over again.

And honestly, some days I’m too tired to even TRY lip reading.  Or being in a group of people speaking this “new language.”

*

And through all my changes, I’ve learned the language of deafness, which in this country is called ASL or American Sign Language, and I’ve learned that I feel closer to dogs than humans.  The language of dogs, their whining, their barks and groans, the way they roll on the floor or wag their tails, has not changed!  Dogs have always spoke this way to me, and they always will. It’s the sort of “constant” that’s a blessing in my life, something that helps me on the path towards being more positive (which is one reason I have Hearing Dogs).

I’ve also learned that some humans have a strong sense of community and generosity, and some do not.  (Or in another words: Not all humans are as sweet as dogs.)

The language of the wind has remained the same, too, though that dialect is the most exciting when you live on a sailboat.

And humans are the most interesting to me when I wake up in an “actually different country,” not America, and have difficulty hearing Hindi or Thai or Tibetan.  (I feel less disabled in India or Kenya, than I feel in my hometown.  Could this be WHY I’d rather be in India?!)

*

It’s strange, what the body can remember of our history. (Read: Body, Remember, a fantastic memoir by Kenny Fries)

Or is it, when something dramatic happens that changes how everyone must relate to us and causes us to be a little more difficult to communicate with, it’s then that we see who our true friends and family are, and what they each will do to meet us in the middle ground, in this divided, blessed space?

*

This blog post is partly inspired by my dear friend and previous advisor: Bhanu Kapil (read her blog), who I will see in two short weeks, on Ghost Ranch, in New Mexico for AROHO’s 2013 Women’s Writing Retreat!  If I am ever out of ideas for a blog post, I will read her blog.  It’s filled with “Prose Incubation.  Social Theory.  Dogs.” and so much more, from the everyday to the sublime.

*

To those caught in the middle, however you might be divided: good luck to you.

*

Through the Lens of Deafness and other Disabilities

Standard

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.

FamilyDog

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:

 The Broken Column by Frida Kahlo OSA164

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:

*

“Long Goodbyes

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.”

 ***