Disability

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summer reading program

The Kinglet, summer 2011

The following essay popped up in my Facebook feed this morning.  I originally wrote it in 2013 after we had to pull my son out of a creative arts summer camp.  He was easily frustrated, cried a lot, had to take lots of cool-down breaks — all things that are normal for a child with autism (which we didn’t know he had, at the time) and an emotional disorder.  I’d put two weeks of my summer aside so I could be there as his coach, but it still didn’t work out. The art teacher treated him (and me) like he had a contagious disease, and the administration (my employer, and friend, at the time) threw up her hands, because what can you do, you know? We have to think of the other children.

I cringed when I saw it again this morning — not because of what I said in it, but because this is a problem – a prejudice – that we’ve been battling all his life. In 2011 it was summer camp at the local Lutheran church — nice people, not equipped to handle him.  In 2012 it was the sports camp sponsored by the City of Newark.  Before his diagnosis, it was the school system that dumped him in an “intervention” room (closet) for most of the school day, or suspended him.  Last year it was the new gifted teacher that didn’t want him in her class, even though his test scores are through the roof and rote remedial learning bores him (literally) to tears.  Why should the other gifted children have to listen to my son cry, right, or witness him being removed by a para, or do their work like good boys and girls while my son audits the class because he’s too stressed that day? That’s not fair, is it? We have to think of the other children.

But you know what? No.  No, your child doesn’t need to be sheltered from my child.

My Child’s Meltdown Belongs in Your Classroom

(Summer 2013)  I’m trying to be professional and understanding about things that have happened this week, but as a parent, my heart is a little broken.

When asked to consider the place of children with emotional and behavioral disorders in an educational setting, the first concern of most people seems to be for the benefit of the other children, and the teachers, and the harmony of the group. Which makes sense, right? When you first think about it.

But I ask you to consider this. A generation ago, even less, these same arguments, based on misunderstanding at best, prejudice at worst, kept children with developmental delays and other handicaps from attending school. It was only with activism on the part of parents and child advocates that this attitude was challenged, and changed, resulting in laws that protect the right of ALL children to an inclusive education, in the least restrictive setting, with all possible and reasonable accommodation.

These days, we don’t much dispute the right of a child with physical challenges to take part in the same activities as healthy children. When it comes to children with emotional and behavioral disorders, however, there is still a pervasive prejudice. There is a perception that such children are bad, that their behavior is willful – they are punished, rather than worked with, and they are marginalized.

The truth is, such a child has as much control over his condition as a child with epilepsy, or with Tourettes, or with Autism, or Cerebral Palsy, or with any other host of impairments can control theirs. That is to say, given an opportunity, and a conducive environment, and appropriate supports, they can succeed as well as any child.

The questions I am asked, as a parent of a child with an emotional and behavioral disorder… Why should other children have to suffer when such a child acts out in the classroom?

– Because these people exist together in the world.
– Because discomfort over differences is healed by familiarity, compassion, and understanding.
– Because segregating “normal” children from “abnormal” children when it is not strictly necessary will not prepare either one for living in an inclusive world. It can only further misconceptions and prejudice. It can only distance the special needs child from a sense of belonging and success.

Why should teachers have to interrupt their class to deal with a child who acts out in the classroom?

– Because every child is different. Some have learning disabilities and need help understanding their assignments. Some children have physical challenges and need help maneuvering their world. Some children have language barriers, cultural barriers, problems at home, problems of self-esteem, problems keeping their breakfast down, problems sitting still, problems paying attention, problems with you.
-If you are a teacher, presumably you are so for a reason. Please don’t shy away from something because you don’t understand it.

With the rate at which children in our society are being diagnosed with behavioral and psychiatric disorders, and in the wake of national tragedies that have dragged the state of mental health care into the limelight, I believe this is something that needs to be said. This is a conversation we need to be having. This is a situation that needs to be challenged.

At the very least, it’s something I need to get off my chest.

Five years ago this month, I retired from my full-time job as a bookkeeper.  My son was my main reason for taking the leap — he had spent half his life in daycare at that point, and I wanted to be the one to raise him — but finding time for my writing was a close second.

I remember driving home from work one day, getting an idea, and reaching for a pen at the stoplight, only to realize that not only did I not have a notebook with me, but it’d probably been months since I’d thought to carry one. As someone who has often relied on writing for survival — quite literally — that was a major wake-up call.

My salary was a good one. Giving it up was hard, and definitely came with emotional struggles as well as financial ones. But we were able to make it work, and for that I will be forever grateful, because I feel like the most important part of my life started the day I traded my calculator for a keyboard.

One of the first poems that I submitted for publication was to a literary journal called Kaleidoscope, published by United Disability Services in Akron, Ohio.

kaleidoscope 620

The poem, “Portrait of a Woman Drinking Coffee,” is a somewhat goofy but earnest reflection on unipolar disorder, also known as cyclical depression, dysthymia, or whatever label the DSM wants to give it this year (basically bipolar disorder with no highs, only lows) – a condition I’ve struggled with since I was a little girl.

My late-teens and early twenties were the hardest (they typically are, aren’t they?) I lost a great scholarship, some good friends, and several years of writing  — almost lost my life, too.

By twenty-five I had my shit (mostly) together (chain-smoking notwithstanding), graduated college with honors, and was working a good trade. Just as important, I was finally able to hold a pen again and start picking away at the emotional scabs that had been keeping me from putting down words in a coherent and meaningful way (and isn’t that an attractive metaphor? pick, pick).

Once I would have tumbled into this emotion
a storm’s eye sitting
in a broken coffeehouse chair
once I would have seen it as poles colliding
closing in on every last spark of joy
but now I see it as an old
familiar friend;
the kind that puts out a cigarette in your coffee
and reminds you
of everything you try to ignore

“Portrait of a Woman Drinking Coffee” is from that era, written in the corner of the Brew Ha Ha balcony in a messy notebook with an ashtray full of clove cigarettes in front of me.

ashtray-295028_640Though it took them nearly five years to publish it (five years!!!), I let UDS take their time (with only minimal grumbling) because I couldn’t think of a better home for a poem like this than Kaleidoscope, a magazine “creatively focuse[d] on the experiences of disability through literature and the fine arts.”

Putting aside the notion that many of the best artists, writers, and performers are/were nut jobs (though they totally are/were), the arts themselves are an important means of therapy and self-expression. This is true for everyone, but perhaps especially so for those whose ability to function day-to-day is a constant challenge. Kaleidoscope provides a forum, a spotlight, for artists with disabilities, including the so-called invisible disability of mental illness. As a survivor, I am happy to be living in an era when the stigma of difference is being tested, shaken, picked at like an ugly scab on our social conscience (see what I did there?) I want to thank projects like Kaleidoscope for adding to that momentum.  I am honored to have even a small part in it.

To download this (Issue #70, “Journeying to Acceptance”) or other issues of Kaleidoscope, visit http://www.udsakron.org/kaleidoscope/issues.aspx.

 

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With MiniWriMo come round again, I’ve been thinking about what to write this month – which led me led me to look back on what I have written, and, more specifically, how those stories came to be.

head-113927_640Sometimes, stories are NOT born because a mommy story and a daddy story loved each other very much.

Sometimes, story ideas come about fully-formed, like little gifts from fiction heaven. (And isn’t it peachy when THAT happens?)

Other times, it takes a lot of forethought and muscle on the writer’s part – like, conjuring one’s inner Frankenstein to hack and sew words together and scream at the Gods until the Thing takes a life of its own.index

And then, sometimes, the process falls somewhere in the middle. A little prompting, a little “hmmm-ing”, a little pen-to-papering, and then… hey, look. An idea begins to grow.
For me, this often takes the form of a “What If” story.

What If… Bad Was Good?

In April of this year, my flash fiction story, DEFIANCE, appeared in Plasma Frequency Magazine.

Issue 11 Cover Preview

DEFIANCE is a fun little piece. Written in late 2012, it predates – I swear! – the Syfy show of the same name. While both the story and the tv show involve alien invasions and pockets of humanity that remain, erm, defiant, that’s pretty much where the similarities end (at least as far as I’m aware – I lost interest in the series halfway through the first season. Sorry Rockne).

In my DEFIANCE, the main character is a soldier in Earth’s resistance against aliens that have enslaved most of humanity. Poised for a sniper attack on the roof of an old elementary school, Jackson recalls his pre-invasion childhood of classroom tantrums and frowny-face notes that made his mother cry. While we learn that it was his inherent defiance that got young Jackson separated from his mother in civilization’s final hour, it was also what spared him from slavery – and presumably it is what helps him thrive in an alien apocalypse.

So how was this a “What If?” Back in 2012, my six-year-old had a disciplinary record that could put any teenaged hoodlum to shame. He is a brilliant child and the apple of my eye, but our boy was (and still can be) a holy terror to his teachers. A year later, he would (finally!) be diagnosed with Aspergers/Autism Spectrum, but at the time the “whys” of him were a mystery. One of the labels bandied about was Oppositional Defiant Disorder, which is another way of saying “irascible, recalcitrant little butthead syndrome”.

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irascible, recalcitrant little butthead syndrome

On the verge of seeing my baby expelled from first grade, I spent one afternoon crying into my hands until, when my own brand of stubborn kicked in, I poured myself a glass of suck-it-up and sat down at my computer. “What If,” I pondered, “being a born butthead was a survival skill? What would that look like?” An hour of fevered-typing later, the world of DEFIANCE had taken shape. Murky shape, maybe – it is only 800 words long, after all – but lo, I’d invented a possible future for my son that wasn’t all bad.

 

WHAT IF can offer new ways of thinking about old problems – and conjure up kick-ass stories, too.

 

What If… Left Was Right?

Science Fiction is an especially appropriate Petri dish for “What-Ifs”; it is, after all, speculative by definition. What if we had the technology to…? What would the future be like if ?

My story, GHOST-WRITER (published thiScigentasyWEBheader2s month in Scigentasy) tackles the Sci-Fi challenge of “What If” in a couple of ways. The primary question, dealing with possible technologies, comes from a note-to-self I found while flipping through old files in search for story ideas: [sic] what if someone’s brain hemispheres suddenly switched dominance?

For those of us who aren’t psychology nerds, “lateralization of brain function” describes the different but complimentary personalities of the left vs right sides of the brain. Though the subject has long made my geek happy (google split-brain experiments), I had recently read a book that was a game-changer for me: My Stroke of Insight, by Jill Bolte Taylor, in which a neuroanatomist describes how her life was enriched by a stroke that disabled her left hemisphere. Free from the constrains of language-labeling and logical thinking, Dr. Taylor describes a world she perceived as free-flowing, creative, and spiritual.

Blausen_0215_CerebralHemispheres
With my, “What If”, inspired by Dr. Taylor, I tried to imagine what it would be like not to lose the functions of one hemisphere or the other, but to have the hemispheres up and trade places – prince and the pauper-style? Would wacky hjinks ensue? Would the body even notice, short of some vertigo, a Matrix-like glitch? The brain is superbly plastic; science has shown that under the right circumstances it can recover from grievous wounds, basically re-wiring itself to restore lost functioning.

It was from this line of thinking that GHOST-WRITER was conceived. In it, my neuroscientist, Carla, has invented a means of restoring function to brain-damaged patients by getting the remaining, healthy hemisphere to annex the dead tissue and graft its own programming there. Though the titular “Ghost-Writer” project is still in its exploratory stage, wrapped up in the proverbial red-tape, an inoperable brain tumor and a pending divorce compel Carla into taking matters into her own hands.

All fiction can be a “What If” playground; as writers, we can pose the question and invent answers within the parameters of any genre. Science Fiction just happens to lend itself particularly well to pushing the boundaries of possibility.

 

What If… Maybe Was True?

For this reason, a lot of Sci-Fi doubles as social commentary: if we can imagine a future or world or an alternate universe with even a minor shift in our cultural norms, what would that look like? Sometimes this socio-political exploration can be overt, with plots that cover the author’s agenda like a dancing green alien’s chemise (*cough* Star Trek *cough*).

In other cases, like with GHOST-WRITER, the questioning can be more subtle. My “What-if” about the brain’s hemispheres was my primary reason for writing it, but because my main characters are gay women, the story naturally raised questions about the future of gender and sexual politics, in particular same-sex marriage (which was not recognizedl in most states in 2011, when GHOST-WRITER was written).

Gaymarriage

So I wrote Carla and Maggie as a married couple –more significantly, I chose not to comment on it. I wanted to create a future where same-sex marriage is not only legal, it’s a non-issue. And I wanted to allow for fluidity, too: when Maggie turns down a date with another doctor it is for emotional reasons – not because he’s a he.

These were little things – I think I said more on the topic by not saying much – but the fact that beta readers were surprised when Carla’s spouse turned out to be a female pleased me, because it means my  take on “What If” here had the power to challenge assumptions.  And that’s, well, something.
What’s great about “What If” is that it inspires us, as writers and readers, to consider possibilities. Not necessarily large or paradigm-changing ones; we should not expect, when we sit down with our laptops or pens, that what we write will save a life or change the world. But, then again, we can always ask:  – What If it could?

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