an incident in the life of a woman with disabilities

experimental writing for my novel:

We walk into a shoe store. Although I am her daughter, she insists on calling me "Mama." People look surprised, as she pronounces "Mama" in a loud yet childish voice. She drags her right foot. Her right arm is bent at an angle, fingers curled into a soft half a fist. She sees a shoe and points to it - "tis, tis." I take it in my hands and show it to her. She studies it, especially the front part, to see if it's broad enough for her tightly-curled toes on her right foot. "Ne, ne, ne." I put the shoe back. Using her body, she tries to explain something to me. She points at another shoe and starts talking in a language no one can understand. Loudly. I get some words, "good, pain, three hundred, pretty, give me." I try to make structured sentences from the words and her body. These might be good. If they're not good, they will cause pain to my foot. They cost three hundred. They are pretty. Let me try them on. But then, I don't always succeed in building logical sentences of her fragmented speech. When I fail, she gets upset. Loses patience. Her voice becomes louder, and she reprimands me, saying "Mama" in an even louder voice. People look now again - we've become a freak show.

Finally, after about fifteen minutes, we find a shoe that may be suitable. I look around for the saleswoman. She stands with her back to us. "Excuse me, can we have this one in size 37 please?" She looks at my mother with a frown. We're really annoying and making the place less pleasant for the other customers. She tells me with her eyes that we are not really wanted here. That we better hurry up and get out of the store.

While she goes to the back room to get the shoes, my mom sits down and I bend over to help her take off her shoes. She squirms as I take off the right shoe and try to straighten her toes. "Ouch! Mama! Pain! Ne ne ne!" I tell her I'm sorry and massage her toes while we wait for the saleswoman. When she comes with the shoes in the box, she takes out the left shoe. I ask for the right one, explaining to her that my mom needs to try on the right one. She frowns, but hands me the other shoe. I unlace the shoelaces, and the struggle starts. I try to push mom's foot into the shoe. It's not easy with the way her toes curls downwards. "Ouch!! Ne, ne, ne. Pain. Wait!" I wait until the pain passes and try again. The shoe isn't cooperating, and the saleswoman is standing over me; she doesn't like the way I'm handling the shoe. Another attempt. "Ne ne ne!!! Mama!!! Pain!" It's not working. I can't get the foot into the shoe. I feel beads of sweat tickling my back. I sit on the floor and look at mom. "No?" I ask in a resigned tone. She has tears in her eyes, but she doesn't look at me. She looks down and to the side. Disappointed. I give the shoe back to the saleswoman and thank her. Then the struggle to put mom's shoe back on.

As we walk out of the store, I see the saleswoman letting out a breath. “The freaks are out of here.” She sees me look at her, and she gives me a look that is liquid with pity.

We walk out of the store, silently. She has tears in her eyes and her lips quiver. I feel sadness.

Yes, it is always like this. Instead of treating us with patience for being a bit different, we are treated like freaks.

Writing women with disabilities into literature – the absence of literary characters with disabilities

As I wrote recently in two of my posts, Women with Disabilities – Thoughts, and Women with Disabilities – more Thoughts, I’ve been pondering about writing on this issue. And now, with my second novel being in its initial stages, this has trickled into my fiction.

But what bothers me is the fact that I only now realized that throughout my years of reading and studying literature, I cannot remember one character with any kind of physical disability. Mental, yes. One character stands out: Jonathan Lethem’s Motherless Brooklyn, with Lionel who suffers from Tourrette Syndrome. Other than that, of course we have all the mad women in the attic during the nineteenth century, but these are by no means disabled women, Charlotte Perkins Gilman’s The Yellow Wallpaper being the most prominent of these. So, essentially, having a Master’s degree in literature, I’m quite familiar with classical, modern and contemporary literature. But try as I might, I cannot remember any other disabled characters.

Throughout my literature studies, we touched upon different issues – race, identity, sexuality, gender roles, economy, politics, geography, slavery, madness, religion, wars, mythology, technology, industrialization, culture, social issues, health, and what not. But again, I cannot remember any lecture or any discussion on disabilities. Women’s mental instability? Sure. Lots of that. But where are all the women and men with disabilities? How come there are no deaf main characters? No main characters on wheelchairs? No main characters with aphasia (impairment of language ability)?

I think this is really outrageous! Not only do we as society not include individuals with disability in the public spaces, we deliberately exclude them from literature as well. And doesn’t literature in fact reflect reality? We exclude them from literature because they are not perfect. They are the “other.” They taint our “beautiful” art. They pose challenges to the narrative. Everything is slower because of them, and we need to go out of our way because of their disability. The artist has to make extra effort to make room for these characters in her/his writing.

To me, literature is not merely a form of the “higher arts.” It is, in addition, a vessel for political and social massages; a means – if used correctly and consciously – to initiate public discourse, to criticize, and to bring public attention to crucial issues society should engage in. All this, of course, through providing deep analysis and a critical perspective. No, I’m not talking about academic articles. I am talking about quality literary fiction.

And so the absence of round characters with disabilities is all the more striking, taken into consideration the role of literature. The degree to which characters with disabilities can enrich and inform literature is invaluable. It has the potential to enrich multiple layers: on the literary side, it has the potential to enrich the complexity of narrative, depth of characters, the range of issues the novel deals with, and the style of writing and structure, among others. Alongside this, it has the power to effect change among readers, thus impacting society. It has the power to bring the social, political and economic participation of people with disabilities in public life to the forefront of public discourse. It has the power to bring the voices and needs of individuals with disabilities from the margins to the center, thereby, contributing to making them equal partners and participants in society.

Dealing with disabilities in writing for me is a conscious effort. A direct result of coming face to face with my own prejudices and preconceptions. But I have admitted my ignorance and am moving forward with processing and learning. I am making a space for characters with disabilities to enter my writing – consciously. Yes, it is challenging both intellectually as well as creatively. The narrative isn’t flowing as with a character without a disability. But this doesn’t pose a barrier. It is a challenge I am working through.

Women with Disabilities - more thoughts

What is disability? Let me start with this question. Is it only something physical and visible to the eye? And do you have to have some kind of an official document confirming your disability? Can you be disabled without being diagnosed as such by a medical body? What about the non-visible disabilities? How much do they count? And where do we draw the line between what is perceived to be a “normal” state and a “disabled” state of being?

I am starting off tabula rasa. Except for the one process-oriented group of women with and without disabilities, and the fact that my own mother has been disabled for the past three and a half years, I haven’t dipped into this area. Before reading any articles, I want to explore this on my own first. To get down my thoughts and form them into some coherent sentences. I’m well aware of the fact that I’m not going to reinvent the wheel, but still – there is something about the raw and intuitive writing before rushing to drink up already confirmed knowledge or reading about what feminists in other parts of the world are doing on this issue.

So here we go: intuitively, and from my experience with my mom and the group, women with disabilities are treated differently. Their disability serves as a marker of their “otherness,” situating them outside of the “normal us.” The disability is also a clear mark of inferiority – intellectual, emotional, and physical.

In the public sphere, we become intolerable to any inconveniences caused by the disability of a woman (or a man for that matter). We prefer to exclude her from any kind of action/activity if her inclusion means we have to compromise or adapt to her needs. Their disability slows us down, diverts us from our real purpose; in short, it gets in our way in a most annoying and inconvenient way. Why can’t they just stay home and remain invisible?!

Why, indeed? Because they are us and we are them. They are not inferior to us and we are not superior to them – in any way! They are us and the we (them and us) have equal rights. To be, to live, to act in the public sphere. And if that means we have to adapt ourselves, our architecture, our fast pace, our language, our mode of existence – then that’s the way it will be. Just as we adapt and change to make room in the public sphere to other “others,” so it should be with women with disabilities – be they confirmed by an official body or not.

But what am I talking about? Our society is a very long way from recognizing the legitimacy of any “others” in the public sphere. Any “other” who inconveniences us is shunned to the margins.

In some more traditional communities, women with disabilities are shoved away, hidden in a dark corner of the house. Some, who are young and have a “light” disability, become the servants of the family.

Enough writing for one day. It is not an easy subject to write about. More later. Still don’t know what form this is taking. For now, I am posting as I write – unedited.

(c) khulud kh, June 2012

Women with disabilities – thoughts

Emilia, my mother in an improvisation workshop. May 2012. photo by khulud kh (c)

I recently participated in a group of women with and without disabilities. It’s funny that I have a disabled mother – three and a half years passed since her CVA, yet until I participated in this group, I never made any connections.

The feminist movement I am familiar with has not made any major steps to include women with disabilities in its activities or even in its discourse. Only recently we initiated some discourse in Isha L’Isha about it, and held the first group of women with and without disabilities.

It’s strange, since in feminism, we advocate for the full and equal rights of marginalized and invisible groups. Women with disabilities have never taken any space in my life. Not until my mother suffered her CVA. But even then, it was something very personal. I had to deal with a completely new reality all of a sudden, in addition to reversal of roles in the family. I guess I was so busy in daily coping with this that I didn’t have time to connect it to something broader.

But now I’m glad I’m beginning to make the connections. The group process is now over, but the themes brought up, and the women who until then were invisible even to me – are taking up space in my thinking process.

It’s clear to me that this is only the beginning. Recently I’ve taken interest in photography, and since it coincided with the disabilities issue, it’s naturally pulling me in that direction. I volunteered to help in the PhotoVoice part of the research that Isha L’Isha is planning with group participants, and I’m looking forward to it. I’m also thinking of doing some small project with my mom with PhotoVoice. So far, disabilities have not appeared in my writing, but I know they will. It’s a process – I can’t rush it and can’t force myself to it. There’s no need. There is a time for it to happen naturally. And I know it will. In what form – fiction, poetry, or non-fiction, it doesn’t matter. It will come out in its own form.

And finally, I hope that the action initiated by Isha L’Isha will bear fruit and that through our awareness-raising activities, more feminist and other social change organizations will start working on issues of women with disabilities.

(c) khulud kh, June 2012