Friday, April 3, 2020

Crisis by Louise Runyon

I have been thinking of it as a situation, because it’s come about so slowly.  But in reality, it’s a crisis.  A crisis of the body/mind, a movement crisis.  A crisis of movement, ironically developing as I prepared to move from one state to another.  And continuing after the move, as I find my way here.

This crisis, or situation, has to do with walking, with standing, with standing up.  It has to do with manipulating fabric, making the bed, shaking out a plastic bag.  With dancing, with swimming, with biking.  With cooking, handwriting, typing.  With rolling over in bed, getting dressed.

It is more than just aging.  It’s neurological, but it’s not neurological.  It’s mysterious, vague, hard to talk about, has no name.  I haven’t liked to talk about it; have feared gossip; have tried to hide; have had embarrassment, shame.

Embarrassment and shame because I am a dancer and a practitioner of a stellar method of movement education.  This method, like my malady, is profound but obscure, hard to describe.  Given my background, I am not supposed to be this way.  No one has expected it, least of all me.  I am supposed to live to be 103, just like my mother.  I am supposed to live better than she did, because I take so much better care of myself.

I have moved elegantly, eloquently, for decadesbut not now.  It’s been surprising, sudden, slow.  I should be full of vim and vigor, but I’m not.  I’ve done everything I could, everything I know, and I know a lot.  I’m disciplined.  I make certain breakthroughsstill, it persists.  It is even more persistent than I am.

A few things I’ve maintained.  BalanceI know how to fall, but I do not.  I’ve maintained walking, even some hiking.  My calves grow solid from climbing the hills.  I have no comfort, but I have no pain.  Sometimes I pass for normal, but less often.

Some things helpplaying catch, kicking a soccer ball.  Talking to people.  Music, finding a way to dance.  The solid, assertive contact of boxing.  The unglamorous activity of resting.  Friends, old and new; family.

~*~
Louise Runyon has recently been diagnosed with environmental toxicity, which affects involuntary movement and requires conscious motor planning for most things she does. Louise has published four books of poetry; her last book, released in 2018, is The Passion of Older Women – a manifesto on the wisdom, strength, needs and desires of older women as well as a testament to those who have gone before. A dancer/choreographer as well as poet, Louise is Artistic Director of Louise Runyon Performance Company. She is currently based in the mountains of North Carolina.  www.LouiseRunyonPerformance.com

Friday, March 27, 2020

Push by Kale Sastre

I try not to step on anyone’s toes
But it’s hard with feet doused in concrete
Other women have dainty ballet slippers
And I have shoes made by a mafia hitman

“If you can’t say something nice don’t say anything at all”
and
“Always tell the truth; be impeccable with your word”
and
“A lie of omission is still a lie”
Cannot all live in harmony
Not harmoniously, anyway

Sometimes I don’t speak up when I should
Too often I speak up when I shouldn’t
I never know what to say
And I’ll agonize over it whether I’ve said it out loud or not

Debates are like verbal sparring and
Conversations are practice matches
I have to be on guard for my opponent and
I need to know who my teammates are

I get so tired from the endless acrobatics
Especially when I never wanted to hurt anyone
But exhaustion makes me push harder
Knowing I’m wearing down gives me that extra boost

That pushes everyone
Away
From
Me
~*~
Biography: Kale Sastre is many things including: a writer, an anthropologist, an activist, a volunteer, a Christian, a translator, a cat owner, and a friend. She is also: disabled, neurodivergent, chronically ill, and gender nonconforming. This makes an interesting mix sometimes, and when it does, she usually writes about it. You can find her writings for The Mighty at themighty.com/u/kale-sastre or follow her on Twitter @kalesastre. She also has a list of publications available at aksartor.wordpress.com.

Friday, March 20, 2020

The Inheritance by Su Zi

Gramma carried mint candy in her handbag, along with a linen handkerchief with a hand needled lace edge that she carried without using ever. Other talismans were a tube of deep red lipstick and a crumpled paper tissue. The handbag was a top strap, traditional shape with a snap close of brass, and was completely different than the soft, shoulder slung bags my mother favored. My mother did not carry mint candy, she carried mint gum. When I became old enough to need a handbag of my own, I had neither; however, by then I understood that the contents of a handbag were distinctive, individual. It was a long time before I understood why these significant women in my ancestry were always accompanied by mints.

After I had access to a car, I would visit Gramma on my own. We would sit in her kitchen and she would tell me of her life: of our shared ancestors, of how she came to this country, of her marriage to my beloved grandfather. One time, she asked me a series of questions about my eating habits—did I like to eat breakfast, what meal was my largest, why was I so skinny “you are a little bird” she told me forever. As a preteen girl, she had lived alone with her father (she wanted me to know his name was Shopkin), and Gramma felt that my eating habits were just like his: she told me I had “A sensitive stomach”.

My propensity for intestinal malaise was well documented among those who orbited my childhood consciousness. I was told I had been a colicky baby who wept for months; when my mother decided to experiment by feeding us McDonald’s, I had painful hours hanging my hind end over the commode; then, at 18, I had a bout of not being able to tolerate food…at all. I was sent to a doctor, who handed me a script for Lomotil—I was not to eat for a month, except a poached egg, or overboiled noodles. I had further bouts of food intolerance, but I did not go to a doctor again. A sleepless night, a significant exam, meant an hour in a pain filled Thinker position, and a queasy public bus ride to class. I began to photograph the private corners that housed my agonies—gas stations, restaurants, home: I had gotten used to chronic diarrhea without thinking about it, it just was part of who I was, just as not being tall was part of who I was.

My mother laughed about it. As a child, there was always a big bottle of Pepto Bismol that never saw lack of use. When I bought my mother concert tickets for her birthday, we went to dinner afterwards, and the very posh Ladies’ room immediately after dinner. I sat in one stall, my mother next to me, and while we both let the burning mud escape us, my mother laughed and laughed.

Over a few decades, such episodes of sudden incapacitation grew ordinary; my economics always made the acquisition of food, any food, more of a concern than whether or not it would tear me up. My constant emaciation was met socially with offers of drugs or dick; I was unaware I was starving.

One Thanksgiving, I had been invited to dinner and arrived to find the kitchen full of young women I did not know. I ate their offerings, they liked my homemade cranberry sauce. They were concerned when I retired to the bathroom for the better part of an hour: I remember repeated attempts to force the door, and also the fever sweat dripping to the tile and bleaching away circles of ground-in sand; the paroxysms had my elbows around my knees, and pain was an incoming tide of electric shocks and burning. Eventually, I made the drive home; yet every time I ate was another episode of agony. Weeks went by. I was in a new town, knew no one, went to job interviews as I lost weight, lost weight until I could barely make it ten feet from my couch to my kitchen without a head rush that had me swooning in front of the concerned cats. That one took two months from me.

Life unfolded as it does when you don’t die young. Eventually, two women stood in my yard and welcomed me to the woman change, bestowed upon me the title of Crone, though it was still decades away from the number the government gave. I was still thin, but the changes to my body included more episodes of lost time with increasing severity.

A few summers ago, I once again lost the ability to tolerate any food. I struggled for a month to find something that wouldn’t bring forth the fits of endless shitting, until I was keeping myself alive with only miso soup. One Sunday, I had been invited to go for a pleasure cruise in a classic car and we stopped at the farm-to-table pizza-salad place. I nursed a cigarette and a fancy root beer. Everything began to echo, and my vision became a vignette of darkness and shooting stars. My forehead was on my knees, my dress was damp, an elbow helped me rise, there was a man on either side of me, and then…. I felt myself lying down, I felt a hand on my ass—perhaps my dress had flown up—I felt how the ambulance needed new shocks and how the tech kept my palm on her knee, how the driver called in my vitals with a sugar level of 30.

It has been a learning, albeit late, of language, although I am still infuriated: I rage against the lost time, the social media posts of foods that I know will kill me have become a kind of pornography. I had one friend who endured what I did, he would lift his shirt to show the scars of multiple surgeries and the cane he needed for resultant tremors; just this past holiday, he died—the last photos of him show a ginger skeleton. It was he who used the word the doctor had: Crohn’s. We had Crohn’s. It had gotten worse as we had gotten older, and so my Crone status was also my Crohn’s status.

In social situations, I make people nervous—there are shunnings. I have been known to steadily eat two dozen sugar cubes while performing other tasks; I have been known to blithely eat as many mint candies. A free lunch is a cocola and a plain chocolate bar. I weigh myself daily, trying to stay more than the 88 pounds that resulted in a public view of my panties.

I do not carry mint candy or gum in my handbag, but I know now why the women who came before me always did.
~*~
Su Zi is a poet/writer and artist/printmaker and edits, designs and constructs the eco-feminist poetry chapbook series Red Mare
Publications include poetry, essays, stories and reviews that date back to pre-cyber publishing, including when Exquisite Corpse was a vertical print publication, and a few editions of New American Writing. More recent publications include Red Fez, Alien Buddha and Thrice. A resident of the Ocala National Forest, with a dedicated commitment to providing a safe feeding respite for wild birds, and for a haphazard gardening practice that serves as a life model for all aspects of her work.

Friday, March 13, 2020

Q&A: Taruni Tangirala, EIC of Rèapparition Journal

1.  Why did you start Réapparition Journal?

There is a specific subset of people in our world that has a particular disadvantage in expressing themselves, their difficulties, and their aspirations—namely, those who endure chronic diseases/disabilities. First of all, having a disability/medical disorder in itself is sometimes difficult to discuss without a large amount of shame and embarrassment to lug around. Second, these disorders/disabilities many times inhibit people from pursuing their interests, passions, and hobbies—and creative expression is an incredible way to help heal from that helplessness. Third, many of such disorders deal with sensitive topics that some may find uncomfortable—and writing about them for the world to see is quite unnerving for some. I realized that a creative platform of some sort is necessary to encourage the discussion of topics such as these. Fundamentally, I started Rèapparition Journal to create a safe space for writing that addresses these topics.

2.  How did you come up with the name?

I hope that this journal will help heal—heal the rift in people's minds through writing, and heal the stigmatization that occurs with some of these disorders. Rèapparition is french for reappearance—and I hope this journal will help spark the reappearance of passion and vitality in people.

3.  Tell me a bit about yourself.

I am a student currently residing in Texas who is passionate about using computation to back advocacy in health. Through my advocacy exploits at various non-profits, I have seen how so many uncomfortable topics that are important to our lives are dismissed in conversation purely because they are too sensitive to discuss. Yet, I've also seen how all it takes is one powerful force to tell the world that yes, these issues need to be discussed, and yes, they are important, to bring about a paradigm shift in old-fashioned thinking. In the case of chronic diseases and their effects on people's everyday lives, I hope to contribute to the movement through this journal. My hobbies include writing, playing my ukelele, and photography.

4.  What is your ideal submission?

All I can say at this point (because we are so new) is to be authentic—an ideal submission shines a light on disorders and other relevant topics in a novel manner.

5.  Do you have any pet peeves submitters should know about?

Sometimes the term "sensitive issues" throws people off—we mean sensitive issues as in the prospect of not being able to discuss that you have a certain disorder to people because it is embarrassing and makes people uncomfortable. However, we definitely don't want any gory/beyond PG-13 material—we want this journal to be accessible to youth as well as adults.

Additionally, the goal of the journal is to be positive and spread positivity. We encourage the discussion of difficult situations, yes, but at the end of the piece (whatever it may be), we want our readers to be left on a positive note.

6.  Your guidelines state:  "Anyone who is empathetic to the causes of the journal may submit pieces."  How did you make the decision to include the voices of those who don't have chronic conditions?

Sometimes, the prospect of having a chronic condition hurts just as much for loved ones and other witnesses—therefore, those who are undergoing a condition may not be the only people to have something to say about it. Furthermore, the goal of the journal is to de-stigmatize chronic disease through discussion, and a discussion always has two sides; we want to hear the thoughts of anyone who can help us advance the cause, even if they don't necessarily have a chronic medical condition.

7.  When are the deadlines for your issues (if any)?

For our first issue, April 1st is the current deadline, but it may be extended.

8.  What is your ultimate hope/goal for the magazine?

Ultimately, I hope that this journal becomes a safe place for discussing chronic medical conditions—not despite the fact that they are sometimes sensitive topics, but because of the fact. Eventually, we hope to become more than a journal—we hope to become a movement.

9.  Is there anything else you want submitters or readers to know about you or Réapparition Journal?

We would really appreciate your involvement in advancing our cause—we can only advance our goals with your support!
~*~
Website:  https://www.reapparitionjournal.org
Instagram:  @reapparitionjournal
Facebook:  Rèapparition Journal
Twitter:  @ReapparitionJ

Friday, February 28, 2020

The Ward of Nightingale Hall by Ennis Rook Bashe (Review)

Image:  A couple stands in a shallow pool of water made by a cascade in the background.  Surrounding them is lush, green vegetation. The woman has long, red hair and is wearing a white dress.  The man has on black pants with no shirt.  They are embracing each other.  The title of the book and author are written in white at the top of the cover.

Note:  I received a copy of this book from the author.

Genre:  Alternative-History/Fantasy/Romance
TW:  Psychological (somewhat physical) abuse

Henry, after suffering psychological and magical scars from his ex-betrothed, is assisted in healing by a ward of his family (Ivy). When Henry is kidnapped by his evil ex years later, Ivy must rescue him. Can she also free his heart?

At first, I wasn't sure if I would like this book.  The descriptions of Henry's ex were cliché (creamy skin and all).  When Raella (the ex-betrothed) turned cold towards Henry, I felt like it was an abrupt, cardboard villain scene with little to make her behavior seem even slightly plausible.  The book is short (around twenty-eight pages), so that might be why certain elements aren't fleshed-out.  There are a few typos.

Fortunately, I kept reading past my initial impression.

The magic system in this book was interesting.  Henry is a transman and a Catalyst, a mage who produces magic to be siphoned.  Raella and Ivy are Channelers, people who can pull magic from Catalysts and manipulate it in various ways.  There is a mention of wizards (who seem different than mages).  It made me want more stories set in this world.

The year was never stated (to my recollection), but there are appropriate markers (fashion, automobiles) to give readers an educated guess.

Henry needs a mobility aid and can tire easily at times.  His levels of magic have a real impact on his body to the point where he also needs medication.  Basically, he's a spoonie and doesn't always know what each day will bring.  The book deals with this aspect well.

Henry and Ivy complement each other nicely.  Their history is given enough time on the page for the reader to understand their connection.  There is a sex scene at the end, but it isn't explicit.

Overall, it's a book worth your time.

~*~
Biography:  Ennis Rook Bashe is a nonbinary graduate student from New York who loves their rescue cat, making cosplay TikToks, and watching horror game streamers. Find them on Twitter at @ennisrookbashe. Follow their newsletter at https://tinyletter.com/EnnisRookBashe :D

Friday, February 7, 2020

Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc (Review)

Image:  Illustrated, green leaves with black lines cover the picture.  In the leaves, there are other images, the largest is a black and green house with white windows.  There is also a foot, a hand, an eye, an ear, and a crutch, which are all white with black outlines.  On the bottom left corner, there are three small purple squares. A big purple square on the bottom right says the title and author of the book in white letters.

Note:  I received an ARC in order to write a review.  The launch date was the fourth, but some places are having delays.

Content Warnings for the book:  Rape (in Sleeping Beauty), murder, ableism, and suicidal ideation.
~*~
Once upon a time, a disabled woman wrote a book about disability representation in western fairy-tales...

Part author origin story, part fairy-tale history, and part disability activism—this book does a lot in 235 pages.

Quote:  "Fairy tales and fables are never only stories: they are the scaffolding by which we understand crucial things."

Each chapter weaves tropes found in fairy-tales around something in real life, whether it's stereotypes enforced in modern media, filicide, an event in the author's life, or the history surrounding certain countries as fairy-tales came to be. The chapters are broken into chunks to make then easily digestible.  The pace of the book is sprightly, though the author's research seems extensive.  It's balanced well.

Quote:  "Why, in all of these stories about someone who wants to be something or someone else, was it always the individual who needed to change, and never the world?"

The fairy-tales discussed in this book aren't just the cheerful, Disney versions but the dark originals as well (with some being summarized in-depth).  There were tales I never heard of before like The Maiden Without Hands, Hans My Hedgehog, and Riquet With the Tuft mixed in with stories including Cinderella, The Little Mermaid, and Sleeping Beauty.  And, it isn't just historical fairy-tales looked at—the author looks at modern tales like Shrek and adjacent stories like Marvel's superheroes.

Quote:  "It isn’t a stretch to draw a line from the Grimms’ treatment of stories and storytelling as a nationalistic device through to Nazi Germany and the depiction of the disabled, othered body as something that needs to be extinguished."

This book taught me many things.  One of the most interesting/shocking to me was how Nazis glommed on to Grimm fairy-tales as an ultimate ideal because they erase so much diversity. Another fascinating tidbit was that ancient Greeks thought things (or humans) could only have true beauty if they were "useful"—excluding most disabled folks in (I'm sure) many abled people's minds.

The only issue I have with the book is that the writing can be a bit repetitive in spots.  Something I read once in chapter two will appear twice more by the time I finish the book.  Thankfully, it doesn't happen very often.

Quote:  "How much time does the disabled person spend trying to conform to society’s expectation of what it means to be a body in the world, when it would be so much easier to move through life without conforming?"

Disability activists are quoted throughout the text and/or thanked at the end.  The names belong to some of the most influential members of our community:  Inani Barbarin, Andrew Gurza, Grace Lapointe, Alice Wong, and more.  It made the book feel quite inclusive to me.

Current-day narratives are also talked about in the form of our hashtags/movements, projects, and articles.  We are shaping the world, and our stories, from the cold clay of the past.  Amanda Leduc honors both our past and future in this engrossing read.
~*~
Author biography:  Amanda Leduc’s essays and stories have appeared in publications across Canada, the US, and the UK. She is the author of the novels The Miracles of Ordinary Men and the forthcoming The Centaur’s Wife. She has cerebral palsy and lives in Hamilton, Ontario, where she works as the Communications Coordinator for the Festival of Literary Diversity (FOLD), Canada’s first festival for diverse authors and stories.

Friday, January 24, 2020

Personal Responsibility and Mindset

Able-bodied person:  Just change your mindset.  Everything else will come.
Me:  It's not that easy for disabled artists.  There are real barriers.
Able-bodied person:  Let's talk about them!  I welcome discussion.

I begin to list the myriad of ways disabled artists are locked out of participating in their industries and how it's all ableism to varying degrees.  I follow it up by saying inspirational slogans and "mindset changes" only go so far when a lot of the resistance in an artist's career is external.  I attempt balance and clarity.  She (the able-bodied person) was already dismissive of a disabled artist speaking their truth before I became involved.

Able-bodied person:  Where is the personal responsibility?  Yes, "ableism" this and that.  It's a word I won't soon forget.  Where's the call to action?

Other people comment taking her side when no sides existed. Her friends and colleagues imply I was calling her an ableist (because she's pro-slogan, I guess).  I assuage everyone's feelings as much as possible before bowing out.  I didn't answer her questions, but I wanted to.
~*~
Where is my personal responsibility in what?  My career? Responsibility in changing things for disabled creatives?

Just because I talk about the bullshit disabled artists face, doesn't mean I try nothing with my career or for my community. I still write, edit, submit, run a mentor program, and promote my work on social media.  A person can hustle and still rage against injustice.  There are very few artists who do absolutely nothing but bitch about ableism.  Why do I feel like she was subtly asking me about being complicit in my own oppression?

I'm not sure I could help her with a "call to action".  People either decide exclusion and bigotry are wrong and people should be allowed equal chance and participation... or they don't.  After learning something, people either expand their knowledge and find a way to help... or they don't.  I didn't realize I needed a podium-ready speech to make someone care about injustice. Maybe I could've given her answers if she asked what allies can do, but the onus was pushed back onto me.  Perhaps she just wanted a happier conversation than ableism often requires.