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Posted in disability/illness, Poems/Poetry

Feeling Good Was Good Enough For Me

When being sick was all you knew
Sweet Jesus, the doc last week asked
“When was the last time you felt good,”
Me and Bobby McGee and I saw black
Roses. Could not thread my way to good.
Life a Harlem-globetrotter procession of sham
Dunks and wheezes. Born RH negative all my
Blood exchanged. Lord have mercy then
Coughing times in bed over and over again.
I hadda find good feeling cuz i was an other early
Outcast over and over. Put the music on
And I would play the piano
Rocking to peace my outcast soul.

Sickness made me hold on to my
Strange and play it on an Aeolian harp
To woo the good places and make me me.
Thank you Kris Kristofferson,
Good enough for a life to live,
To share with you the secrets
Of my soul on the edges
Of strong all along. Be a pearl
On my own making the
Good happen. Jiving Janis.
Feeling good was good enough for me.

© 2020, Linda Chown

LINDA E. CHOWN grew up in Berkeley, Ca. in the days of action. Civil Rights arrests at Sheraton Palace and Auto Row.  BA UC Berkeley Intellectual History; MA Creative Writing SFSU; PHd Comparative Literature University of Washington. Four books of poetry. Many poems published on line at Numero Cinq, Empty Mirror, The Bezine, Dura, Poet Head and others. Many articles on Oliver Sachs, Doris Lessing, Virginia Woolf, and many others. Twenty years in Spain with friends who lived through the worst of Franco. I was in Spain (Granada, Conil and Cádiz) during Franco’s rule, there the day of his death when people took to the streets in celebration. Interviewed nine major Spanish Women Novelists, including Ana María Matute and Carmen Laforet and Carmen Martín Gaite. Linda’s Amazon Page is HERE.

Posted in General Interest, Illness/life-threatening illness, Writing

ELDER POWER: Growing Strong in Broken Places

Courtesy of Philippe Leone, Unsplash

“Authors, like coins, grow dear as they grow old; It is the rust we value, not the gold.” – Alexander Pope


I come to this place of Elder Power through a cascade of chronic catastrophic illnesses and disabilities, which – like life – are ultimately fatal.  Some have encouraged me to write from a clinical perspective. It would seem, however, that the clinical lessons have less significance than the life lessons. It is the life lessons that give us the strength to keep going, that are the true value to be shared, and that make us elders. To me “elder” implies more than “senior” or “senior citizen,” which I see as demographic terms for people who have reached retirement age. A senior is someone who has merely put in time, while elder is about attitude and state of mind. Elder implies one who is accomplished, who has learned a few things along the way.

As a poet, writer, and content editor, it is the life lessons, not the clinical ones, which inspire and inform my work. I have learned, for example, that all humans are in process and therefore imperfect; and that, no matter what our differences are, the most important thing is to remain open to communication and to accept and release our own follies and those of others. I have learned that neither illness nor threat of death preclude joy. I have learned that people who are joyful rarely do harm to themselves or others. I have learned that fear of death has to be directly addressed and then firmly put aside in favor of the business of living. As the saying goes: “It’s not over until it’s over.” Until then, we have responsibilities to others and ourselves. The only real difference between someone who has a life- threatening illness and someone who doesn’t is that the former is no longer in denial.

“If people bring so much courage to this world, “ wrote Hemingway in A Farewell to Arms, “the world has to kill them to break them. The world beaks everyone, and afterward, many are strong at the broken places. But those that will not break, it kills. It kills the very good and the very brave and the very gentle impartially. If you are none of these it will kill you too but there will be no special hurry.”

I am not good, or brave, or particularly gentle. I do not – and never have – suffered fools kindly. Sometimes I let it all get me down. I descend into fear. I am impatient with process, with taking meds and going for seemingly endless tests and doctors’ appointments. Maybe that’s why I’ve outlived my original medically-predicted expiration date by over eighteen years. My mother used to say, “Only the good die young.” My best quality may be that under my protective shell of intractability, I actually am willing to be broken and reformed. I suppose only time will tell if I have grown “strong at the broken places.”

So, here I stand, twenty-odd years into it, hugging my 70s at the dawn of a bright new day in a body that is now dramatically disabled and quite a bit older. It’s still a good morning and a good body. I recognize I once dealt with a worse handicap than my current disabilities. That handicap is commonly referred to as “youth.” I survived. Maturity on the other hand is a true boon, a gift to savor and enjoy with layers of luxurious nuance I had not anticipated. I do not long for my youth. I love my graying hair. I love my wrinkles and the loose skin on my neck. I love the mild deformity of my feet. These things remind me that I am still here after all. It’s unlikely that I’ll dye my hair, though I have. I will not get chemical injections or cosmetic surgery. I will not use rejuvenating grooming products that have been tested on defenseless animals. I am inspired by civil-rights-era African-Americans who sported Afros, said essentially “this is who we are and what we look like,” and chanted “black is beautiful.” I am graying. I am wrinkled. It’s all lovely and lyrical and makes me smile. It’s about ripeness, not rottenness. It’s honesty: what you see is what you get. Aging is beautiful. With maturity, one finds character refined and perspective broadened, energy expands and compassion flowers. The experience of joy comes more easily.

As survivors, we owe it to those who have gone on to live in gratitude for this gift of a long life. How ungrateful and what an insult it is to them for us to bemoan our maturity and yearn for our youth as we so often do. What an incredible waste of time and energy such yearning is. Many don’t survive childhood in their impoverished and war-torn areas. Some others don’t survive childhood due to congenital or other diseases. My sister died by her own hand when she was twenty-seven. I have a wonderful, talented, smart friend in her mid-thirties who will pass within three months from this writing. Like you, I have relatives and friends who didn’t make it to fifty, much less sixty or seventy. All things considered, aging is a gift not a curse.

“People worldwide are living longer. Today, for the first time in history, most people can expect to live into their sixties and beyond. By 2050, the world’s population aged 60 years and older is expected to total 2 billion, up from 900 million in 2015. Today, 125 million people are aged 80 years or older. By 2050, there will be almost this many (120 million) living in China alone, and 434 million people in this age group worldwide. By 2050, 80% of all older people will live in low- and middle-income countries.” World Health Organization MORE

Some of our power comes from our sheer numbers. According to the World Health Organization, 900 million of us were aged sixty or more in 2015 and as of 2018 125 million of us were aged over eighty.  We represent a huge political constituency, a lucrative market, and an enormous fount of energy, experience, and expertise. If that isn’t power in this modern world, what is? What a force for peace we could be.

Some of our power comes from consciousness. We are awake now. We have learned how to live in the moment and how to live joyfully, hugely. That alone is a lesson to share. Some of our power comes from more time and focus. Many of us are retired or semi- retired or on disability, or soon will be. Implicit in that is the time to keep abreast of issues in our communities, countries, and our world. We can take the time and make the effort to get accurate information, to analyze carefully, and to share appropriately; that is, in a well considered, non-inflammatory, non-sensational manner. We can act with grit and grace.

Let the elders among us be the Global Movement of Strength in Broken Places. Let those of us who have this gift of long life seize on it and ply our elder power individually and in concert. Let’s live with joy, do good, and have fun. Most of all let us be generous with our love. Soon enough, when the time is ripe, our bodies will become earth once more. Our spirits will travel on but the river of mortal life will continue to flow. Our children will see us reflected in the eyes of their children. Our grandchildren will strain to hear our voices in rustling leaves and breezes that whisper to them in the night. They will seek us out in moonlight and the warmth of the sun, in the roar of the oceans and the gentle meandering of a lazy brook. They will find us in the hearts of the lives we’ve touched with concern and compassion.

© 2020, Jamie Dedes

Originally published in 2009 in the now defunct California Woman and updated for The BeZine blog series on illness and disability.

Posted in disability/illness, General Interest, Illness/life-threatening illness

Windows

A dusty, dimly lit room filled with empty space and rough wooden floor boards. Along one wall there is a series of narrow windows, that let in very little light. Photo courtesy of Chris Bair, Unsplash.

Nothing but “I can’t I can’t I can’t” is sounding in my head.

My best friend has her hand on my knee. She’s carefully offering me solutions to try to get me out of this trap. I say no to every single one. I know it looks like I don’t want to find a way out. I do. I can’t find it. I want permission to lose it, permission to stop searching for a way to function like a normal person. I don’t want to be held together. I want to split apart and lose myself in the fragmentation.

It’s like the most vulnerable part of me is exposed to the outside world and I have to protect it from even the smallest hardship because it has no armor, and if I damage it, it will never recover. It’s like every tool I’ve learned my entire life to cope with the workings of my mind, to cope with the unpredictability of other people, to cope with my tendency to give all of myself, is inaccessible. I cannot protect myself from anything. 


I hang up the phone. My event has been canceled with just a few hours of notice. I don’t know the words in my language to name the feelings in my head. Anger? Disappointment? Stress? What emotions do those words embody? Are they the ones that I have?

For some reason, I can’t tell anyone that my world is crashing down until I know what words describe my feelings. Somewhere inside me I know there was an explosion of twenty emotions contained by a vacuum but all I felt was the muffled noise that the explosion made when the bomb went off. I want to open the door to this capsule and look at the damage but I can’t find the door either. I want to peel off this band-aid. I can’t find the edge of it, even though I’m scraping my skin, hunting for it.


There are flashes of pain in my heart, and then my vision goes fuzzy as I stare at nothing. I stay like this for a minute and then resurface, the pain returning but a little diluted, and I catch my breath. I don’t remember if I was breathing while I dissociated.


I come up for air and with no warning, I’m lucid again. I feel like myself and yet I thought I was myself before. I want to connect with my boyfriend, I can feel his touch. It penetrates all the way to my core. It’s as if I haven’t seen him all day. Just an hour ago, I was pushing the words, “How was your day?” out of my mouth, as tears built up under my face, filling my cheeks and the contours of my eyes, clouding my vision, making my thoughts slow, waiting to burst out again.


A window into my writer’s brain opens for a brief moment, I manage to type out three paragraphs and then I feel the window slowly closing, my heart succumbing to numbness like a cloud that covers my connection to myself. It’s an impulse to protect myself from something I can’t quite name. I hear a distant cry of grief as my creativity, my productivity, my reason for being valuable, slips away from me once more.

A woman lies on her side on a bed, her arm under her head, staring blankly ahead of her. The view of her is partially obscured by an blurry obstacle in the foreground on either side of her. Photo courtesy of Jordan Bauer, Unsplash.

I’m fine just a little sad and I’m lying on the floor wondering why I’m a little sad but I’m fine and then it hits me like a sack of bricks dropping onto my chest that I’m not scared of abandonment I’m scared of losing access to intimacy, this precious substance, the lack of which causes me to wither and numb myself, and why am I so afraid of losing it? Don’t I know I can find it with someone else? But no, this time, I cannot dance to fill the hole in my heart, this time I cannot easily meet new people to try to date again, this time my disability hangs on my shoulders like a neon sign that says “I’M NOT WORTH YOUR TIME” and I have no way of knowing who can see the sign and who can’t. The bricks stay on my chest even as sobs explode out of me and I gasp at the pain, this new strange backward crying I’ve started doing, as if the act of pushing the pain out of my chest only makes the pain from this wound more vivid, and every breath, I cry to rid myself of the pain and then gasp again as the pain penetrates deeper. The crying stops because I have no answer to the question, “what will I do if I lose intimacy again?” 


One month of increased anti-depressants or maybe it’s getting to the other side of the trauma or maybe it’s the most recent conversations with my boyfriend but whatever it is, I can feel the streaks of dopamine cutting through the dull molasses that so recently covered my heart every moment of the day. Rather than every task being a dead end, pointless, sad endeavor, some of them have light at the end. And then because your brain responds not just to the dopamine trigger itself but the lead up to the dopamine, I get that little bit of light earlier and earlier, like catching my breath for just a moment at the end of a devastating work out that has no benefit. I keep expecting to fall into the tank of quicksand again– where I will respond to every thought, every need with “I don’t care,” or “what’s the point”– but instead I step and there’s solid ground. My feelings swirl and collect neatly, still sharp and intense but they present themselves clearly so I can pick them up one at a time and hold them close.


Like the first day back after a wipeout flu, I’m exhilarated by how functional I am, trying to cram as many to-do’s into this stretch of motivation and energy as I can. I start to slow down and find myself scrolling through Facebook an hour after I finished my last task. Determined to teach my depression that my doing-things neurons can fire even when that cloud is consuming me, I barter with myself until I find a reward motivating enough to get me up. I wash dishes and chop some vegetables for the dinner that I will never make. I sit back down, feeling as if the flu has hit me again and it takes a moment before I realize I’m not depressed, I’m spent. 7pm and I am done for the day.


This weight in the center of my chest keeps pulling me inward. I try to interact, to connect, to think of things to talk about. What do healthy people talk about for fun? I try to predict what is expected of a person like me in a situation like this and mimic what would be done, but it’s as if I’ve never done it before. What did I use to do?

The longer I resist the pull to withdraw, the more exhausted I feel. As I give into the pull, tears come to my eyes without words to accompany them. The pain surges up and out but I am no closer to understanding it. I crumple inward, angry at my inability to understand my own mess.

I read my writing from three months ago and stare and stare at the clearly illustrated points and organized structure. How was my mind ever free enough to write this?


I have a doctor’s appointment to follow up on my medication change. I rate my symptoms on a scale of 0-3, trying to accurately represent what I feel and also accurately represent the difference between the last time I filled out this sheet and now. Last time, I counted out my total, decided it was too high, crossed out several of the numbers, and replaced them with lower ones. I struggle to describe to my doctor the paradox of grief and emotional pain so deep that I can barely function, and yet somehow I am not in danger of hurting myself or neglecting basic needs. Each day I am simultaneously devastated and okay. It’s as if I’m sitting at the edge of a pool and I’m choosing to throw myself in, let myself sink to the bottom, struggle and writhe, and then float back up, out of breath and exhausted. My doctor tells me that it’s okay to call my weird childhood a source of trauma. I think she thinks I’m a person who undermines my own trauma. I am. But not like that.


I’m cleaning my room for the first time in I don’t know how long. My desk became a storage unit, items without homes stacking higher and higher. I start at the top and place one thing at a time in the recycling, the trash, or the place it belongs. The stacks get a little smaller and then my hand falls on… A bar of chocolate? From who knows how many weeks ago, my favorite type of chocolate was sitting untouched at the bottom of a pile of junk. I have no memory of buying it or putting it here.

It’s another reminder of how far away I am from healthy me. I know she’ll come back but I have no sense of how long she’ll be gone. It feels strange having concrete evidence that, just a few months ago, I was clear-headed enough to buy myself a treat for later in the week. I was not constantly inundated with feelings that halt my body until they’ve moved through me, wrecking me in the process, that I was not always resisting the pull of numbness, of something brainless to take the edge off this hurt. I don’t know what the path back to health looks like. I just know I’ve done it before.


A deer crouches, staring into the camera, tail tucked, frightened and cautious, surrounded by dark green foliage. Photo courtesy of Carly Rae Hobbins, Unsplash.

I slowly open a tiny door and peek inside. A warm vulnerable feeling fills me, like watching a fawn and holding your breath hoping it will not startle and run away. The feeling is so delicate and precious that I tell no one I have it. I cannot step inside the door for more than a minute at a time, the fear of self-expression is too powerful. 

When I interact with other people, I close myself off and pull away so that they won’t startle the fawn either. Even when I want to connect, my door inside closes and so does the rest of me, my body language turning away as if I want to avoid all contact even when part of me wants to show my new discovery so badly. 

But I watch as unwittingly, words flow through my fingertips, I have something to say, I think something important and moving and I express it, without the usual wall of doubt surrounding me. If I ask myself to write in a formal document, the terror returns, rising up in my throat as if asking myself to write a paragraph is as bad as asking myself to tell my therapist I no longer want to see her. But I did that, so maybe I can do this too. 

—Kella Hanna-Wayne ©2018 


Originally published on yoppvoice.com as “Windows: Snippets from a Mind Struggling with PTSD, Anxiety, and Depression” on June 16th, 2018.

Posted in disability/illness

China Detains Coronavirus Reporter

2019-nCoV-CDC-23312 without background / Public Domain



(New York, NY) – Chinese authorities have reportedly detained and quarantined citizen journalist Chen Qiushi, who has been reporting on the coronavirus outbreak in Wuhan. PEN America today said holding Chen incommunicado suggests he may have been targeted for his reporting, and that such actions jeopardize not just his rights but the rights of all Chinese citizens to access information about the epidemic.

“Given China’s widespread censorship of stories about the coronavirus, PEN America is gravely concerned over the possibility that Chen has been arbitrarily detained and that authorities are using ‘quarantine’ as a pretext to justify their actions,” said James Tager, deputy director of Free Expression Research and Policy at PEN America, “Even if Chen is ill, there seems to be no discernable reason why he can’t use a phone or a computer, and yet his friends and family say they’ve heard nothing from him. The Chinese government must be transparent about why Chen has been detained, and if there is no compelling medical reason, they should release him immediately.”

On January 24, Chen–a lawyer, activist, and citizen journalist–traveled to Wuhan to report on the coronavirus outbreak. As part of his coverage, Chen posted a series of videos shot in Wuhan’s hospitals and streets, as well as interviews with coronavirus patients and doctors. On February 6, Chen’s mother posted a video saying that friends and family had not heard from Chen and asking for help locating him. Later that day, a friend of Chen’s posted a video saying authorities had told Chen’s friends and family that he had been forcibly quarantined, although officials apparently have not shared when or where this happened.

Chen began acting as a citizen journalist in 2019, reporting on a flooding disaster in Ganzhou, Jiangxi province. In the summer of 2019, Chen went to Hong Kong to report on the ongoing protests there. Upon his return, authorities reportedly repeatedly questioned him and deleted all his domestic social media accounts. In December of last year, Chen shared on his Twitter, he attempted to travel to Japan but was informed by government officials that he was not allowed to leave the country.

“Chen has been targeted for his work as a citizen journalist before, and we fear that the exact same thing may have happened here,” said PEN America’s Tager. “If  he has been detained for his work, this would represent not only an obvious assault on Chen’s freedom of expression but also on the right of all Chinese people to have access to information about serious health threats. It already seems clear that the government’s attempt to censor information about the coronavirus has potentially worsened the public health situation. We urge China’s leaders to take a more transparent approach, and to refrain from targeting those who are speaking up about the coronavirus and the government’s response.”

The outbreak of the coronavirus was first reported in Wuhan, China in late December 2019. A group of several doctors who first went public with information about the virus were reprimanded by police. Among the whistleblower doctors was 34-year-old opthamologist Li Wenliang, whose subsequent death from the coronavirus has resulted in online outrage and calls for freedom of speech. The government is still reportedly engaging in widespread censorship of coronavirus-related stories and news.

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PEN America stands at the intersection of literature and human rights to protect open expression in the United States and worldwide. It champions the freedom to write, recognizing the power of the word to transform the world. Its mission is to unite writers and their allies to celebrate creative expression and defend the liberties that make it possible.

Posted in Disability, disability/illness, General Interest, Illness/life-threatening illness

HaEtz HaChaim

Meta/ Phor(e) /Play

Kiddush on the Solstice

 Down the hall from
 my hospital room
 a man’s voice sings
 the blessing for Shabbat
 wine.
 
             I see out
 my door
 what’s left
 of thin hair
 a pink hospital gown
 hands holding
 the wall
 as an old woman
 peers round the corner.

 When the man
 finishes
 she stumbles
 back to bed.

                      —Michael Dickel
                                       21 June 2019


HaEtz HaChaim 1–7
Digital Asemic-Writing Landscapes
from Photographs and Digital Painting
©2019 Michael Dickel


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Posted in Disability, disability/illness, General Interest, Illness/life-threatening illness

Redefining Disability: An Identity of Adaptation and Creativity

Before 2014, I knew very little about the concept of disability or disability activism. Believing myself to be able-bodied, I had been protected from the whole world of problems disabled people face as a result of a society that isn’t built for them

My journey to identifying as a disabled person was anything but clear cut. Before the injury that flipped my life upside-down, I thought that my pre-existing health issues were within the range of normality. And once it was discovered my sudden uptick in pain was injury-based, I had no reason to believe that my injury wouldn’t heal in a timely matter. Most of our exposure to the world of disability tends to be what we see in TV and movies, and every fictional character I knew of that ever contracted a serious illness or sustained a severe injury always overcame their obstacles and recovered 100% (or they died). The idea that your body could be physically impacted in such a way that you may never fully recover or the recovery takes place over 5-10 years, never occurred to me. I assumed my issue was temporary. 

And when I did eventually begin playing with the word “disabled” to describe myself, I received a lot of resistance from the abled people surrounding me. They would say things like, “Do you really see yourself that way?” or “But you’re so much MORE than that,” as if calling myself disabled was inherently a more self-limiting description than calling myself a brunette. I was discouraged from claiming a label that ultimately became a key aspect of my identity.

The truth is, I had absorbed many of the mainstream beliefs about disability that all of us learn, and I had to find out the hard way that they were untrue. These misconceptions inhibited my ability to accurately describe myself, to be proud of who and what I am, and they actually prevented me from accessing the help I needed. 

Expanding Your
Understanding of Disability

One of the biggest misconceptions about disability that I was implicitly taught is that when you become Disabled, you are entered into the Official Disabled Club and it will be clear and obvious to everyone around you that you are a Disabled Person. (Spoiler alert: This does not happen.)

Our culture sees disability as something concrete and binary which is weird because bodies are incredibly complicated. Pretty much any function of a human body can manifest with a variation that’s extreme enough to be disabling, either due to the severity of the dysfunction or due to the symptoms’ incompatibility with society’s expectations around how people should move through the world. 

Just one presentation of disability can actually represent a huge range of levels and types of ability. For example, there are literally hundreds of reasons you could require a wheelchair: pain, muscle weakness, lack of bone density, fatigue, unstable blood pressure, dizziness, paralysis, amputations, temporary injuries, recovery from surgery, the list goes on. Some people need a wheelchair for those issues 100% of the time, other people need one only when their symptoms are severe and can walk the rest of the time, and yet other people only need them when they’d otherwise be required to stand for more than an hour at a time. “Wheelchair-user,” which is just one disability in society’s eyes, is actually hundreds of different disabilities. 

A young person wearing blue jeans and blue and white polkadot sneakers walks casually beside a person sitting in a wheel chair, holding a cane, as if they are enjoying an afternoon together outside in the sun. Photo courtesy of klimkin, Pixabay.

But our binary ideas about how disability presents itself means we struggle to identify disabilities accurately. Ambulatory wheelchair users– people who use wheelchairs but are able to walk some of the time– are regularly accused of faking because instead of recognizing the wide range of conditions that wheelchairs are used to accommodate, many people have the misconception that either you need a wheelchair 100% of the time or you never need it. Abled people expect disability to present in a very specific way and anything that varies from that 2-dimensional description is treated with dismissal. 

Overall, our definition of what “counts” as a disability, is very limiting and we’re quick to categorize conditions we don’t understand as not “real” disabilities. Conditions like chronic anxiety or ADHD are rarely thought of in these terms, and even people with visible physical disabilities struggle with being recognized as disabled enough

Because what we’re really categorizing is not disability at all, but whether it’s okay for someone to ask to be accommodated. “You’re not really disabled” almost always means, “You don’t actually need help with what you’re doing.” If culturally speaking the general consensus is that you should be able to cope with a physical/cognitive issue without help, then we’re discouraged from seeking it and shamed for “pretending” to be disabled in order to receive special treatment. 

The result is that many versions of disability are hidden from mainstream awareness, and millions of people that would live easier and happier lives if they were given accommodations or life adjustments are forced to go through unnecessary hardship.

You Don’t Have to Do
Things the Hard Way

Prior to disability, I was already in the habit of downplaying my needs, and given this cultural backdrop with which we view disability, I was very slow to embrace the word “disabled” and the implied necessity for assistance that went with it. 

At the time, the idea that if at all possible, you should do something without help, was such a normal part of the society around me that I didn’t recognize how illogical it was. While there are certain forms of access like accessible parking spots or restrooms where there is a limit to how many of those resources are available, there are so many forms of assistance that are not limited. 

But we force this contrived scarcity mindset to all sorts of things: It took me weeks of suffering through the pain of walking on a recently-injured ankle before I realized there was no reason I shouldn’t ask for a ride or take the bus to work. No amount of saying “It’s only five blocks!” would change how resource costly it was for me to walk or how much pain I was spared by getting a ride. 

Joining the disability community opened my eyes to a world of possibilities for adapting your life structure to fit your own needs. Even though I originally resisted joining the community, once I recognized that my set of physical conditions did count as a disability, accepting the identity actually validated that yes, I really did need help, I really did need adjustments to my daily life that were counter to the average American’s lifestyle in order to be the healthiest version of myself. Saying I was “disabled” became a way to make those needs more real to myself.

How Are We Defining Disability?

There is an underlying problem behind all these cultural misconceptions about disability, and it’s rooted in how we define what it means to be disabled. 

The primary definition we have in our culture is called the medical model of disability. In the medical model, a disability is defined by a defect, a flaw, an abnormality, a lack of something, that interferes with your ability to function in everyday life. In the medical model, a disabled body has something wrong that sets it apart from the default body, which is a healthy abled body. (Note that “body” in this context also includes cognitive function and mental health.) 

According to this model, if I call myself disabled, I am saying that there is something wrong with my body. I’m saying that my body is fundamentally lacking in something that normal bodies have. And it’s extraordinarily easy in our culture that moralizes health to conflate, “something is wrong with my body,” with “something is wrong with me.” 

Introducing the Social Model

To combat this stigma, the disabled community created a new model: The social model of disability essentially says that disability is not caused by a problem with your body, but an incompatibility between the way your body works and the way society is structured. If disability is defined by the level of difficulty you have navigating the world around you, it stands to reason that the nature of that world is going to impact the severity of that difficulty. 

The social model is all about identifying the external structures that are making something difficult for a given person and changing and adapting them so that the level of difficulty decreases or even disappears. For example, the popularity and ease of access to eye-glasses and contact lenses means that we can effectively remove a vision impairment that 200 years ago would have been debilitating. 

(Note: There are varying opinions on whether it’s best to use a combination of the social and medical model, or to define the social model not as eliminating disability but as accommodating disability to the fullest extent that is possible for a given condition or environment.) 

A woman riding a red motorized scooter has to duck down uncomfortably low to get under a wooden plank blocking the dirt path unnecessarily. Photo courtesy of makeitsomarketing, Pixabay.

But many disabilities require a more in-depth look at our society’s structure to achieve accommodation: I live in a society where the default expectation is that I need to work for money so that I can pay my basic expenses, and on average, it will require 35-40 hours of work a week to make enough money to pay those expenses (This summary is extremely oversimplified and outright incorrect in many cases, but this is the general belief about what’s normal in our society.) The work I do is also expected to be at a location other than where I live and in most cases, includes doing a handful of the same tasks over and over again. 

None of these constructs are inherent to human society, they’re just what’s normal for this time period and the part of the world I live in. 

But the nature of my disability means that I can work a maximum of 20 hours per week, my expenses are higher than average thanks to additional healthcare costs, leaving the house is particularly resource-costly, and repetitive tasks fatigue my muscles very quickly. If I were to work a “normal” job and pay my bills like a “normal” person, my pain and likelihood of injury would be so high, I would need significantly more assistance, and my health issues would compound on one another. My disability would get worse.

However, if I’m allowed to work part-time, at my own pace, from home, doing a variety of tasks that use my body in different ways, my health and productivity both improve. My pain decreases, I have more energy, and I’m overall a happier person. I am significantly less disabled when my life structure is compatible with my physical needs.  

The social model takes the focus away from trying to fix a disability and instead puts it on improving a disabled person’s quality of life. For me, it dramatically changed my understanding of what a disability is and how I define it: A disability is anything in your mind and/or body that inhibits or prevents you from engaging with basic aspects of society– work, relationships, hobbies, meeting survival-based needs– as a result of a society structured around the habits of the majority. 

Using the social model also puts focus on one of the most important aspects of the identity of being a disabled person: the virtue of adaptation. 

An Identity
of Adaptation and Creativity

If you join the disability community on twitter, you’ll notice the majority of folks there will include “disabled” or the blue “accessible” icon in their bio. But more than once I’ve seen abled people object to this: “You base your identity on your disability? What a depressing outlook on life!” 

If you’ve only learned the medical model, letting your disability define you sounds like you’re saying, “There’s something inherently wrong with me,” or “My life is filled with things I can’t do.” From that perspective, disability as an identity is depressing. 

But to be a disabled person means to navigate a world that was not built for you. You’re playing the game on hard: extra obstacles, fewer power-ups. You are constantly planning for contingencies, advocating for your basic needs to be met, assessing and adapting your choices in the moment when the available pre-set options are not options you can use. 

Being disabled means looking at your environment and being able to pull back the veil of assumptions about what it means to live a “normal life” and challenge them. Being disabled means rejecting the default and saying, What if we did things a different way? 

If I visit a fellow disabled friend’s house, I can count on them to anticipate my needs and ask the right questions to make sure that I am happy and comfortable, even though demands on their resources on average will be higher than the demands on an abled person. An abled friend, other the other hand, usually requires a crash-course on how I need to be accommodated and what I can and can’t do before they can effectively be my host (and they likely won’t initiate this crash-course, which means I have to do it pro-actively). 

A group of friends hang out and take selfies at a bar while drinking beer. They have a variety of skintones and forms of disability, both visible and invisible. Photo courtesy of Elevate, Unsplash

It was the disability community that taught me to adapt my life to optimize it for my needs, to prioritize my own well being over the social expectation of what a life should look like. My disability impacts my career choice, my relationships, my hobbies, my activism, my relationship with myself, my understanding of the world around me. My disability is an integral part of my identity and that is not a sad thing in any way. 

Because being disabled involves an exceptional level of creativity, innovation, adaptation, decisiveness, solution-seeking, thinking one step ahead, and changing the status quo. When I say that disability is part of my identity, I’m saying that I’m part of a group that shares this unique set of skills and this specific outlook on life. 

With such an incredible set of qualities, why wouldn’t I want to identify with the community responsible for teaching me that my needs will always be worthy of accommodation? 

—Kella Hanna-Wayne ©2020


Kella Hanna-Wayne

Kella Hanna-Wayne is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and her work is forthcoming in a chapter of the book “Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities.” For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.


This article was cross-posted on yoppvoice.com on February 8th, 2020.

Posted in General Interest

Neurological

You’ve Become Neurological

What a fetish we have
for being in balance, for
homeostasis in a golden mean, drone balancing the books of life.
Scales, balance, dead weights.
This dubious insistence upon equalities kicks out the untoward: albinos frozen in their pale,
stammerers and limpers struggling with impatient eyes looking on.
Like they’ve crossed over the line “for whites only.” And certainly you neurological ones should stay in place, out of sight, too.

If your proprioception snaps, too,
it’s the granddaddy of the bombing out of you as you know you to be.
This is the medical tyranny of the majority as de Tocqueville cautioned about democracy.
Now what you touch is somewhere, but just not here,
It’s always a reaching.
Your fingers lost your nose to feel find. Feel find has gone.
Like your whole being’s gone dyslexic: you neurological zoo.
No more you for you.
There is anger, too, when people don’t get that it’s out of your hands.
Slithering along between neurons,
that there’s nothing to do
when your nerves fail you.
This new kind of notness,
this neural obliteration
where you can perhaps start reconnecting you.

© 2020, Linda Chown

Linda Chown

LINDA E. CHOWN grew up in Berkeley, Ca. in the days of action. Civil Rights arrests at Sheraton Palace and Auto Row.  BA UC Berkeley Intellectual History; MA Creative Writing SFSU; PHd Comparative Literature University of Washington. Four books of poetry. Many poems published on line at Numero Cinq, Empty Mirror, The Bezine, Dura, Poet Head and others. Many articles on Oliver Sachs, Doris Lessing, Virginia Woolf, and many others. Twenty years in Spain with friends who lived through the worst of Franco. I was in Spain (Granada, Conil and Cádiz) during Franco’s rule, there the day of his death when people took to the streets in celebration. Interviewed nine major Spanish Women Novelists, including Ana María Matute and Carmen Laforet and Carmen Martín Gaite.

Linda’s Amazon Page is HERE.

Posted in Disability, disability/illness, General Interest, Illness/life-threatening illness

Pugliese

(poo-glee-ay-zee)

my grief
in listening to music that I cannot dance to
is just the feeling of my heart leaving my body
as it soars across the dance floor
begging my feet to follow

it is the same pleasurable agony
of missing the one you love,
my brain places each step
and says oh!
wouldn’t it feel good to move this way?
naively seeking a reunion
that will never arrive

but my affair
with listening to Pugliese,
the beast of the tango world
that dancers study for years to master,
is like having my body hurled across the room
against the walls
against the ceiling

it screams why
aren’t
you
dancing

you
will never be enough

you

are

not

worthy

And yet I return to it
to be thrown again
and again and again

a fractured soul
with a battered body
returning to her abusive lover

how I long for the way Pugliese hurts me

—Kella Hanna-Wayne ©2020

Posted in disability/illness, General Interest, Illness/life-threatening illness

Illness ~ Suffering Surgery Surrender

Illness is a worldly test of faith strength and trust. It comes any time and face
it, we must—from  childhood to old age. Some are lucky, some not so fortunate.
Some are born without health, physical and mental; they need care respect and
love. Illness strikes from time to time,sometimes mild sometimes serious. It reminds
us of a power, greatest of all, a power who gives us the cure. Illness taught me
to surrender, accept the changes, and be patient.

And so I faced pain fever and bleeding until the body lay in a red pool on a flat table.
The doctor knew better to let me bleed. I lost a child. Three days and three nights, I just lay.
Life was kind to let me stay, engulfed in cold silence. I could not even pray. I knew that In God’s hands was the way.
Bleeding body and pain again. ‘This is normal’, they all said, and stared. I was a child, my mother cared, now I am a mother.
Would my child care? My child helped, but I myself, too, had to be brave. It all has to be a personal affair in the end.
To nature we all must bend.

Lying cross like on the operation table
I could not move. I was only able to
see the eyes, calm quiet concerned,
the face behind the mask.
I try to remember, but I forget—
my body half lifeless, numb and stiff.
I could not speak. I was only able to

breathe. Frightened, I heard my
heart beat and someone’s faint
talking, some
words audible, some mumbled.

I tried to understand but failed.

Eyes met the eyes as I felt a quick cut,
a part of me slit, incised, painless,
speechless. I remained, while some
talking I heard; my arms now stiff,
I prayed for strength, dropping into
sleepy numbness. I surrendered.
Two unknown human beings—are
they angels from above, hidden behind
gowns and masks? I know not what they
do or how, but they are briskly active.

I shake, I hear a voice, ’15 more minutes’.
I meet the eyes, calm and serene, confident.
I feel secure. ‘It’s done’. I hear talking,
‘twenty minutes’, ‘ suction’, ,stitch’, ‘suction, stitch’.

Then I do not see the eyes anymore, nor
the angel figure. Legs, heavy, start tingling.
Shivering takes over, I tremble with cold.
More talking I hear,
‘blankets’ please; another one,
”I am feeling cold’;  an electric heater
throws welcome heat on my face.
I cross my arms as if in embrace.

The shivering stops—I feel empty.
More eyes, I see, more talking I hear—
why is this room so warm?
Hustle bustle around,
my bed pushed, rolled, turned.

I feel nausea—I see personnel in green.
Am I smiling? Yes, for others, for I am brave.
Inside, my heart cries. I wish to keep looking
in those eyes so calm, so serene, so loving,
giving hope of life and saying, ‘all will be Ok’.

Time
Time,
It is a matter of time

All will be Ok.

Two months later:


As I was leaving the doctor’s room after showing her the test and physical examination reports, she looked at me directly in my eye and said, ‘you won’t be able to sit on the floor anymore’.

© 2020, Anjum Wasim Dar

ANJUM WASIM DAR (Poetic Oceans) is one of the newest members of The BeZine core team.
Anjum was born in Srinagar (Indian occupied Kashmir) in 1949. Her family opted for and migrated to Pakistan after the Partition of India and she was educated in St Anne’s Presentation Convent Rawalpindi where she passed the Matriculation Examination in 1964. Anjum ji was a Graduate with Distinction in English in 1968 from the Punjab University, which ended the four years of College with many academic prizes and the All Round Best Student Cup, but she found she had to make extra efforts for the Masters Degree in English Literature/American Studies from the Punjab University of Pakistan since she was at the time also a back-to-college mom with three school-age children.
.
Her work required further studies, hence a Post Graduate Diploma in Teaching English as a Foreign Language (TEFL) from Allama Iqbal Open University Islamabad and a CPE, a proficiency certificate, from Cambridge University UK (LSE – Local Syndicate Examination – British Council) were added to  her professional qualifications.
 .
Anjum ji says she has always enjoyed writing poems, articles, and anecdotes and her written work found space in local magazines and newspapers. A real breakthrough came with the Internet when a poem submitted online was selected for the Bronze Medal Award and I was nominated as Poet of Merit 2000 USA. She accepted the Challenge of NANOWRIMO 2014 and Freedom is Not a Gift, A Dialogue of Memoirs, a novel form was the result. She was a winner, completing her 50,000 word draft in one month.
.
Although a Teacher and a Teacher Trainer by Profession, she is a colored-pencil artist and also enjoys knitting and is currently trying to learn Tunisian Crochet.
.
Memoir writing is her favorite form of creative expression.

 

Posted in disability/illness, General Interest, healing, Illness/life-threatening illness

Triptych—Space

Neil Armstrong Goes for a Walk

Uncle John’s airedale watches the moon
with me as we walk. The man up there
does not excite a dog’s sense of smell.

John doesn’t understand
how I freed myself from the tv.
This is more exciting than sex, he says.
A man just walked on the moon.

The moonlight outside lacks magic
for him. Meanwhile, every possibility
sparkles on its river of quantum waves.

My Son’s Space

My son wants to find a planet
hotter than ours, but cooling rapidly.
We will trade places with the goldilocks
aliens so each of us finds a just-right home.

This is how he solves problems—missile attacks,
the climate crisis, poverty. He invents solutions,
builds models, gives all the energy and love
he has to liquid possibilities of rescue.

Hearing I have lymphoma doesn’t dissolve his glittering
resolve. He sits, quiet. Then he says, I will find a cure.

Originally appeared in: Black Bough Poetry, 20 July 2019, Issue 2, Broadside 36

The Flea Market

Artists painting river stones
at a flea market table yielded
pet rocks as Apollo reached the moon.
Mine had the moon lander.
I carried that promise of technology
with me until I turned from space.

Now, washed by dust and light from
other galaxies, my smooth head reflects
a chemotherapy travelogue. I retune
to technopoly and drifting planets.

A slightly different version appeared in: Black Bough, 20 July 2019, Issue 2, Broadside 9

 


Bio

Michael Dickel is a contributing editor for The BeZine. He writes on- & off-line & edits his blogZine, Meta/ Phor(e) /Play. His most recent poetry book, Nothing Remembers, came out from Finishing Line Press in September, 2019. He lives, writes, and teaches in Jerusalem.

Poems and recordings ©2019 Michael Dickel.

 

 


 

Posted in disability/illness, General Interest, Poems/Poetry

Two Poems by Antoni Ooto

Housebound

everything was so honest once
but more disappears

games in vacant lots
old haunts
all those loves

days tick down
the mirror considers what’s left

“I sit talking to myself
losing time.”

“I’m at the end of everything
barely existing.”

and my resolve?
that’s already hardening.

Minimal

How small can a life get?

Once with the strength of a Morgan
everything pulled uphill…
now, over time, resigns to cleverness of necessity.

Graceless age clutches my shirttail
dragging me everywhere.

I remember tricking my way.

In a book I read,
a bite of land was given toward the end
something—manageable to lose…

© 2020, Antoni Ooto

ANTONI OOTO has and still looks for answers which he shares at times with poetry. He finds pleasure in reading the works of many poets such as WS Merwin, Jane Kenyon, Donald Hall, Elizabeth Bishop, Margret Atwood, and the humor of James Tate.

“I read various poet’s first thing in the morning aloud.

My wife and I discuss the structure, rhythm and beauty of the lines.”

Reading poetry aloud (he feels) allows the voice to find a cadence that the reader might miss when seeing the words on a page.

Antoni Ooto is a poet and flash fiction writer.  He came to writing late after many years as an abstract expressionist artist. He eventually found his voice in poetry.

His works appear in Front Porch Review, Amethyst Review, The Ginger Collect, Soft Cartel, Eldritch Lake, Pilcrow & Dagger, Young Ravens Literary Review, and many others.

Antoni works in upstate New York with his wife poet, storyteller Judy DeCroce.

Posted in Poems/Poetry

Three poems by Judy DeCroce

Senseless Hope

she worries about losing

but not yet, not now

 

senseless hope can’t be found

 

it is definite…

she will always be ill

a beginning that will now 

be forever

 

I see it, when she does not

sometimes friends replace mirrors

 

but she is still herself in these moments 

with sense of humor fading 

 

details…

less, too much…

all shocking but eminent

 

diagnosis, pills, doctors watching,

talking, watching

talk

 

Still Trying

 

“We are losing altitude all the time” 

—Josephine Miles

Gravity and time must be the story,

strength…the music causing this smile.

 

Stepping to a mirror,

baring all you’ve become…

 

already, some is gone in the falling,

yet most remains. 

 

Anyway…that’s what we do.

late, early

 

Obstacles, challenges,

stepped over as they rise.

 

That horizon is a goal not always ahead.

It slips the lead, follows, or moves beside.

 

Today, yesterday, tomorrow,

that’s what we do…trying the best we can.

 

A Measure of Certainty

memories once carried off 

even with all my hurry

 

were certainly too late

no longer lasting 

 

sometimes a lost memory is the future

forever an empty field

 

I feel guilty 

the whole time.

© 2020, Judy DeCroce

Judy DeCroce, a former educator, is a poet/flash fiction writer and avid reader. Her works have been published by Plato’s Cave online, Front Porch Review, Amethyst Review, Tigershark Publishing, and Pilcorw & Dagger.
 
She began writing flash fiction and poetry in 2006 from which many have been published in US, UK, and India. Judy is also a professional storyteller and teacher of that genre for over 35 years, and has worked with students as young as kindergarten as well as adults.
She uses “first person” storytelling to entertain and has been invited to perform in many settings.
 
A requested instructor in Writers and Books summer program Summerwrite, and, ADEPT: An enrichment program through BOCES 2 in Rochester, New York, Judy continues to teach Flash Fiction and Storytelling.
Her impetus for writing was borne out a childhood tragedy where she was bedridden for 5 years with a then unidentified illness. Because of this, she found it easy to use her imagination to build stories of what could be. 
She was lucky to have a favorite aunt who would tell her stories before she went to sleep. This, was her most important connection to becoming the storyteller she is today.
Judy lives and works in upstate New York with her husband, poet/artist, Antoni Ooto.
Posted in disability/illness, General Interest

Could You Please, Just, Cease to Be?

Earlier this week, as I was crossing the parking lot toward a grocery store, I noticed a man sitting on a motorcycle near the accessible parking spots– the spots closest to the door that are reserved for disabled people. I realized he was parked in one of the striped spaces between the accessible spots.

For a long time, I didn’t know what those striped areas were for. They provide wheelchair users the space necessary to lower their ramp or lift out of their car so they can get in and out. I also learned that many people who are unaware of their purpose, block these areas, thereby preventing the car next to them from loading wheelchairs/walkers on or off. An obstacle in the striped area means that disabled people may not be able to get in or out of their car. 

I kept staring at the motorcycle, assessing, tempted to just go right up to the man and tell him to move but I’ve never told someone off for blocking disability parking before.

I had recently read a story about a disabled woman who was making a run to the grocery store during the busy holiday season, only to discover that the entire row of legally-mandated accessible parking spots was blocked by a truck selling Christmas trees. The few spots that were left were being used by customers loading their trees into their cars, preventing every person who actually needed those spots from using them.

Thankfully, the disabled woman managed to swipe a spot. If she hadn’t, she would have had to skip shopping or wait in the car while her husband and daughter shopped for her. But as soon as she left her car, she was forced to endure a shouting match with a customer who wanted to load her Christmas tree. “She stole my spot!” yelled the able-bodied woman who had 100 other parking spots to choose from.

The disabled woman reported the problem to store management, received a sincere apology, but half an hour later when they left the store, the truck was still there. The people in charge of enforcing the rules had not bothered to do so. Who knows how many disabled customers came and left, unable to shop because they had no place to park.

A woman in a wheel chair is blocked from getting into her car, due to another car parking over the striped lines of the accessible spot. Photo courtesy of Rachelle Chapman, Facebook.

I don’t think able-bodied people understand just how non-negotiable disabilities are. Some of us can walk, some of us can walk short distances. But when we cannot walk, or if we can only walk a maximum of 15 feet, that limit is not something we can push against. We can’t bargain with it. We can’t make it go away. A deaf person cannot negotiate with their level of hearing. A blind person cannot adjust their level of visual impairment.  

Those of us who do have the flexibility to walk longer distances will often leave the accessible spots for someone else on the days that we don’t need them, precisely because we understand that others need them more. We don’t tend to ask for more than we need or round up our limitations for convenience. We play down our needs as often as possible.

I pondered over the story about the disabled woman and the christmas trees as I went inside the grocery store, trying to decide what I wanted to do about the blocked accessible spot. I imagined what it would be like to arrive for a normal boring shopping trip only to discover that you simply can’t get out of your car. I decided to wait a minute and if he was still there when I went back to check, I’d find a staff member and tell them to handle it.

And then I’d check back again to make sure the staff member had followed through.

For some reason, getting people to understand that people with disabilities need accommodation isn’t as simple as telling them. When a person whose job it is to serve customers, refuses to help or offers only verbal support with no action behind it, it reminds us that able-bodied customers will always be prioritized over disabled ones.   

After about five minutes, I went and checked on the motorcycle. Thankfully it was gone.

But the awful feeling that crept over me when I saw it didn’t leave.

A man sits in his wheelchair at the bottom of a flight of stairs, looking exasperated at the lack of ramp. Photo courtesy of Photographee.eu, Adobe.

When someone blocks the wheelchair loading zones, when someone without a disability sticker uses a parking spot, when businesses render the accessible parking spots un-useable or provide a disproportionately small number of them, it sends a very clear message: If you cannot use a normal parking spot, we are fine with the idea that you may not be able to buy food or enter our building. We are fine with pretending you don’t exist. 

What if I hadn’t been there? Would anyone have noticed that there was a problem? In all likelihood, I’ve walked past the same situation multiple times and never thought twice about it. How often does this problem go completely unaddressed?

I don’t have a disability parking pass because I’m now strong enough to walk the extra distance without issue the vast majority of the time so in some ways, this issue doesn’t directly affect me. But the cultural attitude this problem is rooted in, does affect me.


When I worked as a cashier, customers would often place their money on the counter next to the credit card machine– outside of my reach. I told one man that I needed help with the money because I had trouble bending over. He snapped, “You shouldn’t be working here if you can’t bend over.”

Never mind that it would actually be illegal to fire me from a job that’s 99% customer service skills and multitasking, and only 1% bending-over. I heard this attitude from customers repeatedly whenever I asked for help: I shouldn’t be working there, it didn’t make sense that I was working there if I was disabled, I should really find another job. No one offered me a job of course, and no one was interested in hearing that I’d still need accommodation and assistance at a different job. I’d still be disabled.

It was that same message: You shouldn’t be here. Can you just not be here? I’m not interested in the mechanics of how you do that. Can you just stop? Can you just resolve my cognitive dissonance about disabled people lacking the accommodation they need to work comfortably or live without being required to work and let me pretend that’s not an issue?

As with any form of oppression, avoiding ableism isn’t as simple as avoiding the specific people that treat you badly. These messages surround us and make up the structure that we live in: People with service dogs kicked out of public spaces or denied access to public transportation or even private taxis; large sections of well-populated cities that are not wheelchair accessible; people with invisible disabilities harassed for using accessible parking spots because they don’t look like they need one; staff members denying disability assistance in airports because the customer doesn’t look disabled; denying access to life saving health care based on pre-existing conditions; youtube videos about rare illnesses and disabilities filled with comments that say, “Let them die and put them out of their misery,” even when the sick person was capable of communicating and said nothing about being unhappy with their lives.

If your disability prevents you from working, the average length of time it takes to be approved for disability assistance in the United States is two years. The first time you apply is almost always denied, as standard practice, regardless of your circumstances. You cannot work or bring in income during the time you’re waiting for your application, or you will be denied. And if you’re lucky enough to be approved, the amount you receive will not be enough to live on. If you make income from any additional resources or if you get married, your stipend can be revoked or reduced. 

How do you survive in such a system? How can you not absorb that you should not exist?

Snow obscures a disability parking spot, making it almost unidentifiable. Photo courtesy of jbom411, Pixabay

Worst of all, these decisions are made and enforced by able-bodied people who just don’t listen when we say, “Actually, that’s not how this works.” We don’t have the power to set the record straight on what disabilities “look like,” or what resources we should have access to, or what real accessibility is. We just have to hope and pray and be thankful for what we get.

These ideas seep into you, affect your decisions, your opinions of yourself. You may not even realize they are there.


About a year after I became disabled, I noticed that something in my romantic relationship of four years had changed. My boyfriend felt less like a life partner and more like a companion.There were no changes in his behavior that were causing this shift. He wasn’t moving away from me. I was moving away from him.

Once it became clear that my disability was not temporary, I found myself believing that I could no longer be a good life partner for my boyfriend. My life was filled with so much maintenance, boring medical talk, careful balancing of treatments and resources, and always always new limitations. I couldn’t offer excitement or spontaneity or passion like I used to be able to. Why would he choose boring and limited? Why would he want me if I was disabled? Why would anyone?

While I managed to work through these feelings in this particular instance, the central issues beneath them popped up again. When I injured my arm, it took an incredible amount of courage to ask for the help I needed with cooking, cleaning, and other chores.

But even in the face of so many friends willing to help me, my self-esteem plummeted. I couldn’t use my arm or hand at all and the extra energy my body was spending on healing and reacting to pain meant that my focus was shot too. No cooking or baking projects, I could only type on my laptop for short periods of time; no writing, no event planning, no DJing, no any of the things I was good at. I could only read articles on my laptop, watch TV, and spend time with whoever was available to come to my house.

I found myself confronting some old ideas about myself: What value do I have if I can contribute nothing? Why would people want to be around me when all I do is take from them and I don’t give back? I have always needed to be giving 50% more than I take, and if the amount I take gets too high, I’m tortured with guilt. What was there to love about me if I didn’t have my talents to hide behind? What would happen to me if I spent large chunks of my life in this position? 

I had these limiting beliefs about myself long before I became disabled, but the thoughts in my head were now reinforced, not just by me, but by society’s opinions of my disabled body.

At its center, I think the purpose of any kind of oppression is to minimize the existence of people like you. Whether that is by actively killing you, letting you die through neglect or lack of resources, by conceptually obliterating you, by making even you question whether you actually exist or not, or by punishing you for every moment you do exist. Oppression of any group seems to boil down to, “Everything that you’re doing right now, could you please not? Could you please just, cease to be?”

© 2020, Kella Hanna-Wayne

Originally published on yoppvoice.com as “What Ableism Feels Like” on Jan. 14th, 2018

KELLA HANNA-WAYNE (Yopp), one of our newest Zine team members and a partner in our upcoming February series on illness and disability, is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in disability/illness, General Interest

Our February Blog Series on Illness and Disability begins tomorrow; Why “disabled” not “differently abled”

Courtesy of Tiago Moisés under CC0 Public Domain license via PublicDomainPictures.net

“My disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.” Stella Young, was an Australian comedian, journalist and disability rights activist. She was born with osteogenesis imperfecta and used a wheelchair for most of her life. When she was fourteen she audited the accessibility of the main street businesses of her hometown.



Throughout the month of February 2020 The BeZine blog is featuring a range of material on illness and disability in concert with Kella Hanna-Wayne’s YOPP!, a social justice blog dedicated to civil rights education, elevating voices of marginalized people and reducing oppression. Our intention in doing this is to give voice to those with illness and disabilities, to raise awareness of the issues and outcomes, and to offer workable alternatives for those who have to manage in environments that are not conducive to inclusion.

We’ve already had some question with regard to terminology: disabled v. differently abled.  We respect each contributor’s chosen terminology, which will be reflected in their posts.

Kella and I are disabled and we both prefer that term over differently-abled. Here are my reasons:

  1. There are things I – like many others – am absolutely unable to do. Period. End of story.
  2. “Differently abled” is inherently meaningless in this context. All human beings are differently abled. Some are better at music, for example, and others are better at accounting.
  3. Almost everyone has some degree of disability, especially as aging progresses.  If you wear glasses, you are disabled and, depending on your occupation or interests, you might be unable to function without glasses.
  4. A reference to anyone as a “differently-abled” individual, is a cruel euphemism.  In my own case, for example, it diminishes the reality of my 24/7 life, which involves being on high-flow oxygen, being unable to lift anything heavy, being restricted to certain living conditions, often being restricted to bed, dealing with chronic bleeding due to a rare blood cancer, and living with extreme fatigue.
  5. “Differently abled” implies a norm that does not exist. There is no one way to feel, to communicate, to educate oneself, or to ponder and create art. The implication is that anything that deviates from the fantasy norm is less than ideal, possibly even somehow wrong.
  6. “Disabled” is not a disparagement. It’s truth. It’s accurate. Implicit is an acknowledgement that there are productivity and quality-of-life challenges that have everything to do with social, political, and cultural assumptions and structures and nothing to do with any one person’s atypical body or mind.
  7. Finally, “differently-abled” is a stigmata that ignores the kinds of accommodations (including some  life-changing technologies) that could be made available to help those many with atypical bodies and minds to lead fuller, richer lives and to contribute their energy and talent to help others and their communities.

This is the short story, the down and dirty of it.  Input is welcome from readers and we hope that you will enjoy and benefit from contributors’ posts throughout the month. We are still open for submissions to the February blog-post series on illness and disability and for submissions to the March 15 issue of the Zine, themed “Waging Peace.”  Submissions should be emailed to bardogroup@gmail.com.

In the spirit of love (respect) and community
and on behalf of The Bardo Group Beguines,
Jamie Dedes
The BeZine, Managing Editor

Posted in General Interest

Three Poems by Barbara A. Meier

The Rattlesnake and the Hen

There is a garden ring of stumps
guarded by Sugar pine and Douglas fir,
majestic in the shedding of needles,
forming a carpet of spongy pine duff.
The scent of rich decay coalesces with the perfume
of pine bark baked in sun at 5000 feet.

The cluck and cackle of one Gallus Gallus Domesticus
punctuates the susurrus of the creek pooling around rocks.
She grubs for earthworms and crickets, under the duff mounds
and rotting stumps, unaware of the shaft of sunlight
through the feathery branches illuminating the coil
of the Crotalus Oregonas. His brownish blotches melding green,

rattling the needles with his castanets, startling the hen
to hysterical squawks and shrieking cackles.
Her Salvation comes in a shovel
held like a fiery sword in the hand
of Archangel Michael, thrusting down,
severing the head from a gyrating body in space.

In the silence of the hen, the gasp of the wind
high in the trees, comes the thud of dirt clods
hitting metal, the fall of the head into the hole, buried.
The body hung to dry on the cabin side.
and pine needles raked to cover the blood.
By the creek, the Gallus Gallus Domesticus,

scratches the dirt, wallowing a hollow,
tossing dust on her feathers bathing her body in dirt,
chuckling with happy noises, standing, shaking,
and flinging the earth, from her feathers, cleansed of parasites,
in the garden of stumps, surrounded by pine,
with the murmur of creek and heat of the sun.

Idols (Isaiah 46)

Depression is the idol in my mind:
a bird of prey, perched on my tablets
of destiny, tearing the cuneiform symbols
off the damp clay. The idols are asses
loaded with gypsum bas-reliefs
depicting every dragon memory
in the event panels of my life.

I am that beast of burden, an onager
laboring westward, bearing the gold
and silver of shame, anxiety, and bitterness
to a new land where I have been summoned.
Your words shatter my stories and melt my fears.

They comfort me when I don’t understand
your purpose and what is to come.
The former things of ancient times
are recorded in my DNA because
You are my God and there is no other.

Bahia del Espiritu Santo (Bay of the Holy Spirit)
dedicated to the LWML

Ascribe to the Bay
the Brown Pelican, the Watchman
on the piling, the prophet, gate-
keeping the muddy waters of Mobile Bay.

Ascribe to the Bay
the Laughing Gull, Black-headed, smirking
like the laugh of Sara behind
orange lifeboats strung along the Fantasy.

Ascribe to the Bay
bullrushes, shaggy carpet, shielding
Moses, the bass and the blue hyacinth
in the lush estuary of the Tensaw Delta.

Ascribe to the Bay
the osprey, the fishing-hawk, sheltering
in its nest in the crucified tangle
of cables of an abandoned crane.

Ascribe to the Bay
the Jubilee, the swarm of crabs, shrimp, and eels,
shimmy up the shore, filling washtubs
with God’s Firstfruits.

Ascribe to the Bay
the Resurrection Fern, dead-looking,
supported by the Live Oak branch,
waiting for the baptismal grace of water.

Ascribe to the Bay
the women who came, dressed
in purple, carrying banners in praise
to the Lord, missionaries with small boxes.

Ascribe to God
the glory of His creation and His plans for our mites
and our availability. We are the rivers flowing, flushing
the Bay on the third day to be reborn again.

© 2010, Barbara A. Meier

BARBARA A. MEIER has spent the last four years living on the Southern Oregon Coast.  She retired from teaching this summer and hopes to find time to travel and write. Her first Micro Chapbook, “Wildfire LAL 6” came out this summer from Ghost City Press. She has been published in The Poeming Pigeon, TD; LR Catching Fire Anthology and The Fourth River.  https://basicallybarbmeier.wordpress.com/
Posted in Poems/Poetry

Four Poems by Juliette Lee

be sure to double check layout

Dhamma                                                                                                       

 

Ten determined days lend

wind to wings of spring,
hastening a warming.

 

Each silent breath bleeds
through bone until
crowned in caul, I slip

from sanctified grip, heed
the ancient howl of home,

discover heaven in my feet.

Dhamma – natural law of liberation

 

 

 

Hound Point

 

 

Paused. Ate wild blackberries.

Inhaled musk of leaves drooping with morning,
flattened rowan berries into soggy soil.

 

Arrived at the cliff top, fortified.

Faced growling swell and frothing waves

bursting onto the shore.

 

Poised, my body caught the current of the fight,

bristled then beamed. A lighthouse

in my own storm.

 

 

 

Gerbera Daisy

 

The gerbera’s dark eye

stares into my soul,

 

questions the distractions

pulling me off balance.

 

Black pinheads

cluster in the centre

 

girdled by an iris

of inner petals.

A serrated disc of orange

suspended,

 

like a spinning plate

that one day decided to stop.

 

A single stem of happiness.

I am enough.

 

 

Uncle Seamus

 

Uncle Seamus wore three-piece suits, kept a litre of vodka by his bed,

watched Death Wish on repeat and lived on the twenty-third floor
in the Gorbals.

 

He was a plasterer and most nights got plastered himself.

By fifty, he needed more than a cast to hold his broken body

after a lifetime of benders.

 

At my wedding reception, he leant in close and I watched

as his cigar burnt a hole in my veil.

‘Ah Julie hen, I can gie up the fags but no the drink.’

 

Christmas, I went to his grave with my dad.
‘I’ll no be joining you yet Seamus.’

I held him as he wept.

 

Seven months later, Uncle Seamus came to me in a dream:
suit trousers, blue striped shirt, no waistcoat, no jacket.

He was standing a short distance away, my dad beside him.

 

Uncle Seamus turned, asked if I understood.

I nodded,

buried my dad six weeks later.

© 2020, Juliette Lee

JULIETTE LEE is a former chemical engineer with a decade of experience at senior management level with chemicals giant ICI. Her international career spanned process design, production management, sales and marketing, corporate communications and business management. It was worlds away from her working-class background in the council tenements of Glasgow. And, however successful her life looked from the outside, everything was about to change. On 20th February 1999, she experienced a profound awakening. This paradigm shift in consciousness gave her new eyes to see where she no longer belonged and the courage to surrender to the long and difficult path of personal transformation and re-orientation of her life. Juliette moved into the world of coaching in 2002, trained with The Coaches Institute, and became an NLP, MBTI® and energy practitioner as well as an award-winning speaker for the leading chief executive organisation, Vistage. Ironically, her former training in applied physics has proved invaluable in the field of personal alchemy. Dedicated to her own development, Juliette regularly uses dreams, creative writing, meditation, shamanic practices and yoga as tools for personal transformation. She has written a daily journal for almost twenty years and has been a practitioner of vipassana meditation since 2012, attending a 10-day silent retreat each year. Having based most of her professional life in the industrial north of England, Juliette returned to her native Scotland in 2013 and now lives by the sea near Edinburgh, where she writes and rides horses whenever she can.

 

Posted in poem, poetry

Sick Leave

when everything good leaves my body

my loves, my likes, my have done/s, my will do/s

when my arms are limp, my mind full of a buzzing and humming

 

when my friends are whisked away into the whirlwind of their lives

and I am the only inactive thing

I am left with your voice chipping away at my mind

 

it’s as if I had been wearing all my accomplishments like a robe

holding them close to my body 

covering the inadequacy underneath

 

when my body grinds to a halt 

and I am stripped of every ounce of my value

underneath it all, you are still here

red and raw on my naked skin

 

when the pain of my throbbing joints flood me 

my whole self circling around and around

I try to imagine that the grey aches and sharp flashes

are something beautiful

 

tonight I ask myself

what does my pain look like?

I shut my eyes and see the night sky filled with stars

 

I am the black expanse of unending nothingness

my pain appears as a million balls of light 

 

the shape of me is only visible 

by following the path of my pain

© 2020, Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp), one of our newest Zine team members and a partner in our upcoming February series on illness and disability, is a disabled, chronically/mentally ill freelance writer who is the editor, publisher, and main writer for Yopp, a social justice blog dedicated to civil rights education, elevating voices of marginalized people, and reducing oppression; and for GlutenFreeNom.Com, a resource for learning the basics of gluten-free cooking and baking. Her work has been published in Ms. Magazine blog, Multiamory, Architrave Press and is forthcoming in a chapter of the book Twice Exceptional (2e) Beyond Learning Disabilities: Gifted Persons with Physical Disabilities. For fun, Kella organizes and DJ’s an argentine tango dancing event, bakes gluten-free masterpieces, sings loudly along with pop music, and makes cat noises. You can find her on Facebook, Twitter, Patreon, Medium, and Instagram.

Posted in General Interest

Environmental Justice ~ Netted Turtles, Suffocating Whales, The Ocean Needs Help ~

Netted turtles suffocating whales,
fettered fish, life in the seas, no more
some fishermen’s tales, or of pirate ships
with towering sails, is now filled with
plastic tin can waste –
Smoky dust hangs everywhere, frightened
birds restlessly seek air, all clean, one large
falcon fell, and brought a 737 down to land,
real flier  of the skies, is the bird or  machine?
sunlight blocked, nothing pure nothing fresh
to taste, land weeps for flora and fauna, forests
denuded are falling to death, dinosaurs long gone
to rest hope new ones don’t surface, as water is

scarce and plants depressed- no more does the
nightingale sing, so loud is the clang and hi-fi din,
flowers are captives of terracotta pots, rubbish dumps
growing are up to the chin,

Colors all smudged –reflect the Earth’s distortion
my heart pains at the planet’s destruction-
have we left a place, free of pollution?
I wonder if ever we shall find a solution.
May the Lord so merciful and gracious
forgive us, for the dishonor and desecration.
Come forward, look around, let us take action,
It’s time we cleaned the land and cleared the ocean.

© 2020 Anjum Wasim Dar

ANJUM WASIM DAR (Poetic Oceans), one of the three newest members of the Zine team, was born in Srinagar (Indian occupied Kashmir) in 1949. Her family opted for and migrated to Pakistan after the Partition of India and she was educated in St Anne’s Presentation Convent Rawalpindi where she passed the Matriculation Examination in 1964. Anjum ji was a Graduate with Distinction in English in 1968 from the Punjab University, which ended the four years of College with many academic prizes and the All Round Best Student Cup, but she found she had to make extra efforts for the Masters Degree in English Literature/American Studies from the Punjab University of Pakistan since she was at the time also a back-to-college mom with three school-age children.

Her work required further studies, hence a Post Graduate Diploma in Teaching English as a Foreign Language (TEFL) from Allama Iqbal Open University Islamabad and a CPE, a proficiency certificate, from Cambridge University UK (LSE – Local Syndicate Examination – British Council) were added to  her professional qualifications.

Posted in Poems/Poetry

cord in d# minor

three days of rain
of pain and painted flesh
the moan of empty rooms
and what is left
but the sheeted furniture
the whistle and shuffle of bones
a broken telephone my own footsteps

how quickly they appear and disappear
those passing tones these luminous encounters
the changing unseen floating dreams
neither living or dead but waking

distant strains of miles and coltrane
the reflection of the moon on passing trains
inarticulate fingers suspended over keys
the creaking eaves that echo all is gone
what’s left of me? i’m going home

i drift from myself to major and minor
the percussion of the brushing of leaves
a wind in transition a slur of expression
i am divine imperfection
the rapture of autumn the sorrow of fall
i lie in my shadow not me at all

but the one who lives outside myself
who finishes what i’ve left undone
who sings for you and eats thin air
who reaches for nothing and finds nothing there

© 2019, Antonia Alexandra Kilmenko

ANTONIA ALEXANDRA KILMENKO  is a former San Francisco Poetry Slam Champion and she is widely published. Her work has appeared in (among others) XXI Century World Literature (in which she represents France) and Maintenant : Journal of Contemporary Dada Writing and Art archived at the Smithsonian Institution in Washington, D.C. and New York’s Museum of Modern Art. She is the recipient of two grants:  one from Poets in Need, of which Michael (100 Thousand Poets for Change) Rothenberg is a co-founder; the second—the 2018 Generosity Award bestowed on her by Kathleen Spivack and Josheph Murray for her outstanding service to international writers through SpokenWord Paris where she is Writer/ Poet in Residence.

Posted in Poems/Poetry

Three poems by LindaAnn LoSchiavo

The Visitation

Tall kissed-out pale fronds of potted ferns
Adorn the entry, their cool shadows dim
Switching the parlor — — death’s last living room — —
Where time hesitates and dark furnishings
Project inarguable dignity.

Bookended by brass casket handles, lids
Too heavy to be raised again must sense
My presence, those defiant eyes I closed,
Who parsed my childish alibis, whose last
Wink nicked the priest, who forced death to hold still
Till her eyes sent light leaping into mine.

Embodiment

My sister lives forever in six drawers
Where Mom maintains her clothing, worn, outgrown.

Preserved in cameras, she’s chambered,
Sealed shut like darkroom prints, unmoving face
Still undeveloped as her unspent youth.

Moored on his island of bad memories,
Her boyfriend, claiming self-defense, wears stripes.

Nighttime she’s back, soft stabled in seizures
Of stars or hovering in ghost orb’s mist.

A pinch of lonely air lifts blankets, hugs
Half of my bedding.  No heat radiates.

The younger person I still am inside
Peers out.  Instead of ghost dents on the sheets,
I see her shuffling the deck, smell smoke
From phantom joints, red lipsticked, decayed dreams
Beyond my line of sight, time’s taut trapeze.

I yearn to grab her wrist, yank heart and soul
From cold oblivion, yell, “Breathe again!”

Hope hops on life support, prepared to drag
Her from the brink and storm the underworld.

Geometry’s shades fade — — by dawn’s dispersed.

The Uninvited Guest

With measured strokes, I brushed defiant hair,
Cascading waves that cancer left untouched.
You’d had enough of hospitals, that lack
Of privacy, imagining your home
Serene, secure, free from intrusive pests.

It would shock you to learn we’re not alone.

At dawn, the presence by the sills crispens,
Emerges as the drapes inhale into
A phantom shape.  Infernal company,
Omniscient brakeman, timer in cold hands,
Poised, waiting, exhalations nearly through.

Lost in the territory of morphine,
Deciding to eject your breathing tubes,
You tossed away the life-saving device.

Asleep, I’m unaware — — till ghost commands
Arouse me full awake.  There’s no choice but
To go rescue you, reconnect the air.

Long shadows darken the stairs, that peek-a-boo
Behind the hooded cloak.  I startle you,
Attaching oxygen’s feed properly,
Removing you tonight from danger’s ledge.

A grimace rises from the bedding’s edge

© 2019, LindaAnn LoSchiavo

LindaAnn LoSchiavo, a Native New Yorker, is a dramatist, writer, and a poet who writes formal verse.
Her poetry chapbooks Conflicted Excitement (Red Wolf Editions, 2018) and Concupiscent Consumption (Red Ferret Press, 2020) along with her collaborative book on prejudice (Macmillan in the USA, Aracne Editions in Italy) are her latest titles.