Sandra M. Odell is a disabled mother of two special needs boys, a writer, editor, gamer, and Clarion West 2010 graduate. After a stroke in July she feared she would never write again. After much soul searching fueled by equal parts dread and hope, Sandra decided that if she couldn’t write long, she would write short. One story a day, for the 12 days of Christmas. Hydra House later collected the stories into a book. Knowing she accomplished that feat has kept her going during some very dark times. Her book, The Twelve Ways of Christmas, can be found here.
by Sandra M Odell
Pick a diagnosis. The manic-depression that spins me widdershins? The PTSD that lead to hospitalization in 2009? The diabetes? The DID that makes my skull a very crowded place? The stroke that left me with significant sensory deficits, and processing disorders?
Since I figured out which end of the crayon made the smoothest line on the paper, I have lived in the shelter of words. I explored myself and the world around me one word at a time, teasing out pieces of reality in the hopes of explaining why the world appeared so different from inside my own head. With words I could reach out to people in the hopes they might not see me as uncomfortably different. Words were the bricks I used to build a safe place when the pain and confusion became too much to bear.
Fast forward to July 14, 2010. I’m a grown woman, wife to a loving and compassionate husband, the mom of two wonderful boys with special needs, an advocate for families with special needs children, a gad fly, and a writer. That morning I found I couldn’t brush my teeth. My hand wouldn’t do what it was told. My face began to droop. 2 hours and countless tests later, doctors confirmed I’d had a stroke. Occupational therapy addressed my fine motor deficits, physical therapy my balance, and speech therapy my issues swallowing, yet no therapy could bring back my words. My sanctuary came tumbling down, leaving me open and vulnerable to a world I did not recognize.
(As an aside, it’s taken almost a month to organize and write the above 255 words.)
Seeing me today, you wouldn’t think of me as disabled. I appear as normal as anyone might expect given the circumstances – a saint to some, a madwoman to others. Not only do I have all of my shit in one sock, I carry that sock proudly and use it to slap down anyone who so much as thinks to look down on my children or families like mine. Yet when I attempt to broach the subject of my own mental health needs and physical disabilities, I am shouted down and told there’s nothing wrong, it’s all in my head.
And they’re right. It is all in my head. In fiction as in life, I am invisible.
Everyday I struggle to collect myself and my words into something resembling a cohesive means of communicating my thoughts to others. I fight to remember to take my medications that allow me to interact, in even the most limited fashion, with the world. I trip and fall on things that aren’t there, and am often faced with the consequences of actions I do not remember. I sometimes fight to use a mouse, tie my shoes, load the dishwasher, or speak with more than one person at a time. Any day I manage to cook for my family is a cause for celebration. The same for not going fetal at the first hint of cigarette smoke. I write what and when I can, and have even produced words that others enjoyed enough to publish.
Why is she telling us this?
Because I am as much a part of the world as anyone else. I live, breathe, think, and matter. Often I struggle, sometimes I fail, and, like you, I pick myself up again and keep going. I will match you blow for blow in the school of hard knocks, yet to many people I am invisible.
Too often people with hidden disabilities are glossed over as unimportant. We don’t look disabled, so we must be lying. It doesn’t work that way. Conditions without any outward physical manifestations can cripple someone as certainly as those that require special tools or assistance. It is important to fight against the fear, suspicion, and cynicism that would relegate those with hidden disabilities to invisibility. Representation means acknowledging the presence of all people, including those whose physical or mental capabilities may not suit your understanding of the word “disability.”
Similarly, the struggle for the representation of special needs in fiction is necessary for writers and readers. As writers, it is our jobs to offer up inclusive, far reaching fiction with believable characters without boundaries or stereotypes. As readers, we should demand writing that challenges us to think about the world outside our own limited experiences. All sexes, all genders, all preferences, all races, all religions, all nationalities, all ages, all abilities.
Finding “the other” in fiction is also important to finding ourselves. People with hidden disabilities are no exception. Fiction is a means of further educating people about conditions such as diabetes, depression, lupus, schizophrenia, and many others. Hidden disabilities exist in the world. Why shouldn’t they exist in fiction? We are all “the other” in some fashion, whether by culture, genes, or experiences. By seeking out stories with an inclusive cast of characters, we take the first step to opening our own eyes, and when you open your eyes you invite the invisible into your world.
There are no limits, no boundaries. No one is invisible. Everyone matters. I matter. I am here.
Allow me to repeat myself. I. Am. Here.
Can you see me now?