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Posted in disability/illness

At Last: U.S. Social Security Administration “Modernizes” Its Disability Rule for Non-English Speaking Workers

Social Security Commissioner Andrew Saul announced a new final rule today, modernizing an agency disability rule that was introduced in 1978 and has remained unchanged. The new regulation, “Removing the Inability to Communicate in English as an Education Category,” updates a disability rule that was more than forty years old and did not reflect work in the modern economy. This final rule has been in the works for a number of years and updates an antiquated policy that makes the inability to communicate in English a factor in awarding disability benefits.

“It is important that we have an up-to-date disability program,” Commissioner Saul said. “The workforce and work opportunities have changed and outdated regulations need to be revised to reflect today’s world.”

A successful disability system must evolve and support the right decision as early in the process as possible. Social Security’s disability rules must continue to reflect current medicine and the evolution of work.

Social Security is required to consider education to determine if someone’s medical condition prevents work, but research shows the inability to communicate in English is no longer a good measure of educational attainment or the ability to engage in work. This rule is another important step in the agency’s efforts to modernize its disability programs.

In 2015, Social Security’s Inspector General recommended that the agency evaluate the appropriateness of this policy. Social Security owes it to the American public to ensure that its disability programs continue to reflect the realities of the modern workplace. This rule also supports the Administration’s longstanding focus of recognizing that individuals with disabilities can remain in the workforce.

The rule will be effective on April 27, 2020.

Posted in disability/illness

Three Poems by Assamese Poet Guna Moran, Translation Courtesy of Bibekananda Choudhury

Courtesy of Jan Kopřiva, Unsplash

SNAKE

I frisson on seeing a snake

As if the long venomous tongue jutting out
Would bite me lethally
Instantly on seeing

But the number of death
Bitten by long pointed tongues
As thousand time less
Than the number killed by
Blunt tongues

Failure far exceeds the achievements
The fear of losing in achievement
is not there in failure

As the fact
How heartbreaking s the sorrow
Of losing after having
Compared to
Not having at all
Is vivid in memory of the snake
It juts out its long forked tongue
So that none can settle at a desolate corner of its heart

The tongue is the impenetrable sentinel
Of the inner world of the snake
Visitor takes to its heels
On seeing the guard
But snake do not chase to bite anyone

Actually
All the snakes are innocent
We are indeed
Panicky

SLEEP

Sleep is bliss
Death is bliss too

The first one is not permanent like the second
But the transitory is favoured to the permanent

Fatigue after gratification
Sleep after fatigue
Gratification possible following sleep
Gratification impossible after death
That is the reason
The second one is everyone’s favourite

We are basically punters
Punters need more sleep

ILLNESS

Now

She cooks meals
I devour

She washes the clothes
I put on

She is responsible for
Fetching the children
To and fro from school

She is responsible for
Receiving guests and relatives

Marriage and functions
Meetings and discussions
Are her responsibility

She is like a bobbin
Since waking up
Till retiring to bed at night

I just give a call at time
She appears in a whiff

That I fell in love one day
I forget altogether

© 2020, Guna Moran; Translation Bibekananda Choudhury

GUNA MORAN is an Assamese poet and critic. His poems and literary pieces are published in national and international magazines, journals, webzines, newspapers and anthologies such as –
(i) Tuck magazine (ii) Merak (iii) Spillword (iv) Setu (v)Story Mirror (vi) Glomag (vii) Poem Hunter
(viii) The Sentinel (ix) The Hills Times (x) Litinfinte (xi) Best Poetry (xii)Academy of the Heart and Mind (xiii) The Creation times (xiv)Infinite sky (xv) International Anthology of Poems on Autism (xvi) International Anthology on Water (Waco Fest Anthology 2019) (xvii) International anthology on TIME (xviii) THE VASE : 12th Guntur International Poetry Fest Anthology 2019. (xix) POETICA : The Inner Circle Writer’s Group Poetry Anthology 2019 (xx) Nocturne (poetry of the Night, An Anthology). (xxi) Phantasmagoria Magazine.Apart from this, his poems have been translated into Italian and French, Bangla language also.

BIBEKANANDA CHOUDHURY, an electrical engineer by profession working with the State Government of Assam has completed his Masters from BITS-Pilani. He has also earned a diploma in French language from Gauhati University. He has got published works (both original and translated) in Assamese, Bengali & English in popular periodicals and newspapers. His translated poems have been published in ‘Indian Literature’, the bi-monthly journal of sahitya akademy. ‘Suryakatha’, the Bengali adaptation done by him of the is being taught in the undergraduate Courses of Banglore University and Post graduate Courses of Gauhati University. A collection of 101 folk tales from the foothillsof Patkai translated by him has also been taken up by publication by Gauhati University. He is presently the editor-in-chief of Dimorian Review a multidisciplinary web journal.

Posted in Illness/life-threatening illness, Poems/Poetry

Cancerland

Out with the old, in with the new could

apply if refers to surgery to remove

urinary bladders all studded with tumors

that don’t respond to chemotherapy

administered intravesically through thick

catheters oy ugh inserted in penises.

 

With this dim prospect of employing such

a big procedure which’d fashion

a bit of large colon into a fresh sterile sac,

one realizes how much we have

now bonded with previously unnoticed

unloved taken-for-granted organs.

 

Well-wishers offer hope old receptacles

and us, after many happy years

together, reconcile relations, start to work

out existing problems — or if not

in cards dealt, resolve to divorce benignly

before move on to new partners.

© 2020,

GERARD SARNAT is a poet, physician, executive, academic and social activist. Gerry is an MD who’s built and staffed homeless and prison clinics as well as a Stanford professor and healthcare CEO. Currently Gerry is devoting energy/ resources to work with internationally known and recognized leaders addressing global warming.

Sarnat won the Poetry in the Arts First Place Award plus the Dorfman Prize and was nominated for Pushcarts plus Best of the Net Awards. Gerry is published in academic-related journals including University of Chicago, Stanford, Oberlin, Brown, Columbia, Virginia Commonwealth, Arkansas, Harvard, Johns Hopkins, Wesleyan, Slippery Rock, Appalachian State, Grinnell, American Jewish University, Sichuan University, University of Edinburgh and University of Canberra. Gerry’s writing has also appeared widely including recently in such U.S. outlets as GargoyleMain Street Rag, New Delta ReviewMiPOesias, poetica, American Journal Of Poetry, Poetry Quarterly, Poetry Circle, Every Day Poems, Clementine, Tiferet, Foliate Oak, Failed Haiku, New Verse News, Blue Mountain ReviewDanse Macabre, Canary EcoFiction Southeast, Military Experience and the Arts, Poets And War, Cliterature,  Qommunicate, Texas Review, Brooklyn ReviewSan Francisco MagazineThe Los Angeles Review and The New York Times. Pieces have also been accepted by Chinese, Bangladeshi, Hong Kongese, Singaporian, Canadian, English, Irish, Scotch, Australian, New Zealander, Australasian Writers Association, Zimbabwean, French, German, Indian, Israeli, Romanian, Swedish, Moscovian and Fijian among other international publications. Mount Analogue selected KADDISH FOR THE COUNTRY for pamphlet distribution nationwide on Inauguration Day 2017. Amber Of Memory was chosen for the 50th Harvard reunion Dylan symposium. He’s also authored the collections Homeless Chronicles (2010), Disputes (2012), 17s (2014), and Melting the Ice King (2016). Gerry’s been married since 1969 with three kids, five grandsons with a sixth on the way and looking forward to future granddaughters.

Posted in news/events

Adults Unintentionally Make It Easy for Young Children to Eat Dangerous Pills

Courtesy of Haley Lawrence, Unsplash

Each year there are about 400,000 poison center calls and 50,000 ER visits as a result of young children ingesting medications when adults weren’t paying attention. A new study finds that more than half of the time when children get into prescription pills, the medication had already been removed from the child-resistant container by an adult.

The findings come from a study of calls to five U.S. poison control centers by researchers from the U.S. Centers for Disease Control and Prevention (CDC), Emory University School of Medicine, and the Georgia Poison Center. The study appears this week in The Journal of Pediatricsexternal icon.

“These data suggest it may be time to place greater emphasis on encouraging adults to keep medicines in containers with child-resistant features,” says the study’s senior author, Daniel Budnitz, M.D., MPH, of CDC’s Division of Healthcare Quality Promotion. “There is an opportunity here for innovative medication container options that promote adult adherence and provide portability and convenience, while maintaining child safety.”

Child-resistant packaging keeps kids safe – but only when pills are inside

The current study found four common scenarios in which young children get into prescription pills after the pills are out of their original containers:

  1. Removed to remember to take as prescribed: Adults put pills into pill organizers that are not child-resistant.
  2. Removed for ease of travel or transport: Adults put pills into baggies or other small containers that are not child-resistant to carry with them.
  3. Removed for convenience: Adults leave pills out on countertops or on a bedside table for someone to take later.
  4. Removed unintentionally: Adults sometimes spill or drop pills and may miss some when picking them up.

The most common scenarios varied by type of medication. Attention-deficit/hyperactivity disorder (ADHD) medications (49%) and opioids (43%) were more often not in any container when found by young children. Diabetes drugs (34%) and cardiac medications (31%) were more often transferred to alternate containers such as pill organizers or baggies. Nonprescription medications were most often accessed from the original containers, but for many of these medications, child-resistant packaging is not required because of low potential for toxicity.

Grandparents’ pill organizers often involved

Investigators also asked whose pills the children were getting into. Most of the time, the children got into their parents’ pills. However, for some prescription medications that can be very harmful to young children in small amounts (e.g., diabetes or cardiac medications), over half belonged to grandparents. Therefore, it will be important to remind grandparents, as well as parents, about the importance of keeping medications up and away and out of the reach and sight of children.

CDC recommends keeping medications in the original child-resistant packaging. If one must remove pills from their original containers, a few precautions can help keep children safe:

  • Use a container that is child resistant.
  • Securely re-close the container after every use.
  • Put the container up and away and out of a child’s reach and sight immediately after every use.
  • Keep purses, other bags, or pockets with medicines in them up and away from young children.
  • If pills are spilled when taking or transferring medications, double-check to make sure that all pills are picked up.
  • Save the Poison Help number in your phone – (800) 222-1222 – and call right away if you think your child might have gotten into a medicine or a vitamin, even if you are not sure.

For more information on what parents and grandparents can do to safely store their medications, visit:  https://www.cdc.gov/features/medicationstorage/index.html and UpandAway.orgexternal icon.

Posted in Disability, disability/illness

They called it a Punishment for the Unknown Sins, Some called it ‘Madness’. Today it is called ‘Developmental Disability’ and my life was destined to be a part of it’…

Courtesy of Sandy Millar, Unsplash

He came into this world with an innocent spirit  but with a physical condition, recognized as ‘Development Disability’. At that time  it was commonly called ‘Mental Retardation’, which meant anyone suffering from it  would be having difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”.

A helpless human being born in this world with an innocent soul, oblivious to life’s reality, unaware of its purpose, totally unconscious of self but for the fulfillment of the  basic need for food and strangely, of extreme sensitivity to music. The tunes that caught his fancy would excite him to the point of screaming that gradually melted into crying and, after long hours, would end by fatigue and sleep.

Everyone at home loved music. Father had quite a collection of 75 rpm records and a stylish Grundig record player which would be attached to the radio. Almost every evening there would be a half-hour music session before dinner was served.

My earliest memories are of joyful moments when he was born. Good looking, with dark eyes, long eyelashes, adorable face specially when it broke into a smile, but something was very odd about him. I could not understand just what at that time. Two years old but hardly able to sit: “when will he play with us? Why doesn’t he speak ?” The only answers were “with time dear” and “in due time, he will.”  We would run off and get busy with our own games and books, accepting the quietly given explanation.

When he was five, he began to sit, but still no speech, nor play, nor self awareness. He would sit on the tricycle but could not pedal or ride. With time he learned to stand and one day took a few steps. Soon with the support of the wall he began to walk. Still no speech. Fits of laughter began to occur and would end up in screams. Lying on the floor nothing would stop the screaming untill time brought an end to them.

He never knew he had a name. He was not conscious of t parents, siblings, or anyone else. He had no idea of day or night. When he started walking he was not aware of the way to go. Once unnoticed he walked out of the gate and onto the road, he was almost run over by a passing vehicle. He was hit and the fall broke two of his ribs. It was a painful time for him. From then on he had to be strictly monitored and often in a bolted room.

With passing years the truth of his never getting well and normal was accepted. He would never be able to converse or take care of himself. He needed constant vigilant care for falls or injuries, for safety against electric wires and shocks, for all sorts of dangers. There was no end to care as he was alive in a world of his own. Parents did all they could. No medicine would work.

Hunger is a strong instinct. He would reach out and hold the arm tightly of anyone close to him at that moment and would push that person towards the door of the room.I t was a clear indication that he was asking for food, but he had to be fed. He could not hold a spoon or a cup, nor a biscuit nor a piece of bread. Sometimes the morsel would get stuck in the throat because it was not properly chewed. Panic would result. Fortunately the first aid of patting on the back would work.

He was not aware of the dangers of injury. Once, in a fit of laughter he clutched the electric extension wire on the floor and let out a loud scream, by the time the connection was cut his hand was burned, the flesh cut and bleeding. The wound healed but the hand could not be normal again. The need for constant vigilance kept the whole family alert. The risk of leaving him alone even for a few seconds was profound and life threatening. One aspect in his personality was that he was a docile human being. Nonviolent.

A newly established state had very little  health care or disability support centers for special-needs children or adults. Tariq ,as he was named would live in his own home, which for the family became a guarded place. Fear concern and worry prevailed, only prayer would bring some solace and strength to the heart. One can never fully understand nor find any answers. The truth is with the One Power Almighty.

Disability of all sorts needs constant care comfort patience respect and love. May Allah the Most Gracious and Most Merciful save and protect his people on this beautiful Earth and May all be blessed with the best of health and happiness.

© 2020, Anjum Wasim Dar

Posted in Illness/life-threatening illness

The Spoon Theory

This one is dedicated to those many who continue to create in the face of sometimes dramatic  physical health issues and disabilities. Be as well as you can be. You are valued. 

There are two videos included here.  If you are reading this post from an email subscription, it’s likely that you’ll have to link through to the site to view the videos. They’re both worth the time and effort.

The Spoon Theory (see video above) is a clear and vivid way of explaining what it is like to live with any chronic, catastrophic and potentially life-threatening illness. I suspect that it also explains what life is like for those who have lived long enough to be described as “elderly.” Understanding The Spoon Theory gifts us with compassion for ourselves and patience with how long it takes to get even the smallest tasks done.

The first step in living successfully with catastrophic illness and advanced aging is to recognize (acknowledge/understand) the ramifications in terms of everyday life and its details. The Spoon Theory helps with that.

The second step is acceptance. That’s about letting go of your story. It’s about not being defined by the circumstances of your life. It’s about living with not struggling against. This requires something much more profound than positive thinking, which tends toward the superficial.

Letting go of our stories means letting go of judgement and attachment and a sense of victimization, which are the root causes of many of our very human pathologies. The philosopher Arthur Schopenhauer wrote of this my-story mentality as “striving, disappointment, and boredom” or a life that is devoid of Spirit. Songwriters, who often make their living by stoking the “pain body” or the residue of emotional pain that stays with us [Eckhart Tolle], call this the IFD disease – idealization, frustration (the ideal cannot be achieved) and demoralization.

The third step in the journey is to adapt, a business of the heart. Adapting is not about giving up. It’s about finding our core of  joy and gratitude and no one reminds of joy and gratitude  better than the beloved Benedictine monk, Brother David Stendl-Rast (video below), who combines the wisdom of traditional Christianity with pragmatism of Buddhism.

No guilt. No judgement. Just joy. With understanding, self-compassion, patience and acceptance, we can still produce as so many of us do … and maybe, instead of beating ourselves up over what didn’t get done each day, we’ll be able to pat ourselves on the back for all we do accomplish. We cannot share The Spoon Theory with everyone. Many people will not understand our challenges. All that matters is that we do and that we support one another.

© 2020, Jamie Dedes

Posted in Illness/life-threatening illness, Poems/Poetry

Antibiotic Blues

Courtesy of Anton Darius, Unsplash

I’m bulbling, bumbling like a dumb blond(e) from the Golden Age of Hollywood
without the figure
or the yellow locks,
a himbo who isn’t very beau.
How can a petite podwery, poerdy, poderwy-
POWDERY damn it
wite, white pill-or is it the pinkish-bluish capsule with the cryptic digits-
besiege a brain and morph it
into mash, or is it mush, to match
the collywobbles in the gut during
eight days of frustrating pharma fog thicker
than a full-frat, full-fat Frappuccino?
Science squashes my IQ as I misplace my cell phone, followed by the TV remote, keys and
bank card and my, um…I forget.
As if hijacked by the shakiness of a heat haze, I stumble to the ice machine but
come back with nothing.
Dates and deadlines become meaningingless in a malfunctioning memory bank, and
I fix and refix phrases like “extra much” that sounded Shakespearean when I typed them.
Mercurial emotions mock me like the menacing Space Invaders of my childhood as
innocuously constructive criticism rips up any remnants of calm.
Someone’s profiting from my prescriptions while I’m vantiqued, vanquished by the salvos of adverse effects.

© 2020, Adrian Stonaker

Originally publish in U-Rights Magazine, December 2019.

Crisscrossing North America as a language professional, Pushcart Prize and Best of the Net nominee Adrian Slonaker is fond of opals, owls and fire noodles. Adrian’s work has been published in WINK: Writers in the Know, Ariel Chart, The Pangolin Review and others.

Posted in disability/illness, Poems/Poetry

Two poems by Alana Saltz

Field Trip

For you, Ms. Frizzle, I would fold
my fingers around the curves of my stomach, dig
my nails into the flesh, rip
it open so you can go right in.

Take your big-eyed bus full of curious children
and explore my mysterious body.

Watch organs lighting up a little too bright.
Red blood cells drifting lonely
like they’ve lost their best friends.
Scattered inflammations and infections hiding
in muscle and tissue.

Explain to the children that these are things
that make me hurt
but not enough for anyone to see.

And when people don’t see something,
they don’t do anything.

Teach them that lesson.
It will always apply.

This poem first appeared in Philosophical Idiot and in Alana’s chapbook, The Uncertainty of Light

Halt

I’m enthralled as I watch an actor scribble symptoms
in notebooks and cry when the pain is too strong
and see doctors who seem to know a little too much
about what’s happening, but it’s okay.

I’ll keep watching.
I can’t be that picky.

I ignore all the cues that this will end
the same way as all the other TV
reflections of me, the fun house mirrors
that only show sickness as a distorted, shortened
one-way road.

There was no other ending.
He’s only got one place to go.

His actor family
weeps over his departure
at just the right time
in the series.

His death is art.
My life goes unseen.

This poem first appeared in AlienPub and in Alana’s chapbook, The Uncertainty of Light

ALANA SALTZ (alanasaltz.com) is the editor-in-chief of Blanket Sea, an arts and literary magazine showcasing work by chronically ill, mentally ill, and disabled creators. Her poems have appeared in Occulum, Five:2:One, YesPoetry, Moonchild Magazine, LadyLibertyLit, and more. She’s the author of the poetry chapbook, The Uncertainty of Light. You can visit her website at alanasaltz.com and follow her on Twitter, Facebook, and Instagram @alanasaltz.

Posted in Disability, disability/illness, Environment/Deep Ecology/Climate Change, environmental injustice

Cruel Legacy, Environmental Injustice and the Growing Incidence of Interstitial Lung Disease

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Thanks to the support of my world-class son and a stellar medical team, I’ve lived for about two decades past my original medically predicted expiration date. Every year or so I feel compelled to get on my soap box –  though the topic is off-theme for my poetry site, The Poet by Day – about lung disease, its increasing prevalence, and its debilitating effects. This post was originally written in 2016 for The Poet by Day. At that time, I needed oxygen for activity only and carried a small tank or two in a backpack as above.  As expected, over time the disease progressed and years of insufficient oxygen resulted in other complications: pulmonary hypertension and right-sided heart-failure. These are further complicated by a rare blood cancer (not curable but managed). These complications result in my being home-bound and often bed-bound for days.

I am now on high-flow oxygen (15 liters) 24/7 and am attached to two linked stationary oxygen concentrators at home and have large portable tanks for doctor visits and to get around the senior housing facility that is my home. These are moved around with specially-designed carts.  My son must come with me to doctor appointments because it takes four tanks per trip, which is too much for me to handle on my own.



At the time in our history when we started to see nature as something apart from us, when we gave up our shamanic instincts and in our hubris separated them from our growing science, when we devolved from stewardship and one-with to ownership and power-over, we set ourselves up for a world of multifaceted pain and disruption. One result in modern times is environmentally induced disease caused by xenobiotic substances that result in cancers, autoimmune disorders, and interstitial lung diseases (ILDs).

My concern here – as a powerful and noteworthy example of the impact of industrial pollutants and of wars and other violence to the earth and its inhabitants – is interstitial lung disease. I have hypersensitivity pneumonitis, an ILD that can be caused by smoking. I am a lifelong non-smoker. Everyone – EVERYONE – is at risk of ILD, smokers or not, and so are other animals. We know that in the United States and England alone, the numbers suffering from ILD are growing. No matter where  in the world we live and what we do for work, we all need to recognize and acknowledge this as part of the complex package of environmental injustices.

Our lungs are the only organs that are exposed and immediately vulnerable to industrial pollutants and inhaled chemicals, dust and other particulate matter in the air. One study tells us, “Lung cancer is the number one cause of cancer-related deaths in humans worldwide. Environmental factors play an important role in the epidemiology of these cancers.”

Consider the two hundred ILDs: These are diseases that affect the tissue and space around the air sacs (alveoli) of the lungs resulting in scaring (fibrosis). We – and other animals – can’t breath through scar tissue, which is not permeable. Hence the exchange of carbon dioxide and oxygen is inhibited. The result is a slow, horrifying and painful death by suffocation. This is mitigated for people like me who have access to healthcare, supplemental oxygen and medications like prednisone and mycophenolate mofetil and, when the time comes, palliative care and ultimately hospice. People living in poverty, in war-torn areas or working at risky occupations in third-world countries, get no such relief and no palliative care is available to them in the final stages. This is unimaginably cruel.

While the most common interstitial lung diseases are considered idiopathic, they can result from exposure to certain chemicals– including medications – and from secondhand smoke and occupational exposure to agents such as asbestos, silica, and coal dust. They may also evolve from an autoimmune reaction (hypersensitivity pneumonitis) to agents in the environment, some of which might be naturally occurring and benign for many people.

Forbes Magazine cites lung disease as one of the continuing legacies of 9/11, the result of “toxic collections of airplane fuel, asbestos, fiberglass, metal, plastic, garbage, waste materials, fecal material, human remains and who knows what else.” In reading this description, one can’t help but think also of the people of Syria and other regions of war and conflict. It is not uncommon for soldiers returning from war to report newly developed respiratory disorders.

Industry, war and conflict, greed and denial, all combine to put the very ground we live on at risk, the air we breath, and the precious functioning of our lungs … We rightly worry about and advocate for issues of deforestation, pollution, hunger, dislocation, destruction of property and other issues of environmental injustice. Not the least of our motivations, concerns and advocacy must be for the sake of our lungs. It’s a fight for the very breath that enlivens us.

© 2016, words and photograph, Jamie Dedes  

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Posted in disability/illness, Poems/Poetry

Four poems by Antonia Alexandra Klimenko

Song of the Mad

It wouldn’t be so bad
if I lost it in one place
at least I’d know where to find it!
But Noooo…
I have to lose it here!
I have to lose it there!
And just when I find it there
I‘ve lost it again here!!

People wonder why
I never answer my own door
I wonder if they can hear me
breathing from under my covers?

Sometimes I hear myself
calling from another room
Or it could be that other guy
who blames everything on me
Of course it’s never his fault
Nothing ever is!

You see
Nothing is enough for him!
First he impersonates me and steals my best lines
Now he covers his ears with mine
and complains that I don’t sing
with the right inflection!!

As if
he’s the only one
who has to listen to me at night !

Song of the Deaf

What can I say
that you haven’t already heard
before me?
I feel left out

Everyone else has two sides
but when I turn around to face the other way
I still point in the same direction!
Sometimes people talk behind my back
right in front of me!

Of course I must expect that
I try to anticipate everything
otherwise I fall behind
and I have nothing to fall back on!
That is why
my world is suspended in animation–
I use my hands to balance silence
the way stars hold up the sky

A cloud can fall back on the sky
but I must climb deeper
into God’s Ear!
Only…where does the sky begin?
I’d give anything you know
just to hear the color blue

Song of the Blind

It bothers me that my eyes are broken
and God will not fix them

Each morning I watch and listen for Him
and wonder through which doorway of my senses
He will choose to enter next

Each day He and I together
make and remake the bed–
make and remake the world

Mostly it is the same
And that is both my comfort and my fear

I have heard that once someone is truly loved
she is never the same
You cannot imagine how I long for change!
You cannot imagine how I long for certainty!
I can only imagine

I never quite know which
I will stumble into next:
Death that l o n g night
or
Life that l o n g day!

Dear Lord
I am without sight
I am not without vision
Please find me

Song of the Homeless

How long must I go on
pushing my life before me?
My feet are bare and swollen—
they do not know me anymore
And I haven’t yet enough hands
to keep me warm
nor make a pillow for my head

Maybe I’ll grow new fingers tomorrow
so they too can stick out
like a sore thumb

I suppose you think
I can find a better place to hide
than in the poverty of my skin

Do you think I like
carrying my heart around with me
in a basket?

You do not care
that I have forgotten the words
to the songs I am singing
And I am running out of songs

How could you know first-hand
that it is not my death I fear…
only that I should learn of it
second-hand

© 2020, Antonia Alexandra Klimenko

A former San Francisco Poetry Slam Champion, Antonia Alexandra Klimenko 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 disability/illness, Poems/Poetry, poetry

So You Want to Know What Autism Is Like

Autism* is standing still while
Everyone runs for the cliff edge
And you want to know why
Before joining them
But the surge pushes you down
And they thunder across your back
And you’re bloody but not broken
Because the rage keeps you sane
 
Autism is always being chosen
To be
The Cheese
In Farmer in the Dell
The Cheese stands alone
In the middle of the circle
As baby classmates point and sing
And you cry
But the next year you don’t cry
You will never let them break you
At least they won’t know
You care
 
Autism is getting it wrong when a boy flirts
Confusion from what he means
Interpreted by his ego
Thinking you’re indifferent
To his oh-so-obvious charms
And he hates you
 
Autism is being nice to a boy
Who seems like a friend
But not realizing
His ego cannot allow someone like you
To be kind
To flirt (must be, he reasons)
And he hates you
For showing interest in his
Oh-so-obvious charms
 
Yet autism is like everyone else
Loving friends and movies
Books and games
Dreaming of being asked
To the prom
And buying a dress
To transform the lightning and thunder
Into rainbows of love, peace and happiness
 
Autism is loving sex and drugs and rock and roll
But luckily learning that drugs can take you
Where you don’t want to go
Because you can’t come back
But some nights you think
Maybe that’s not bad
What’s to come back to?
Only thunder and lightning and rain
 
Autism is when married
Choosing a dysfunctional 
Who becomes an adversary
Family and friends roll their eyes
And laugh when he reveals your secrets
Meant only for him
It’s not like you’re barking like a dog
Or flapping your hands
Everything looks “normal”
But there must be some type of invisible mark
That all can see
Except me
 
What did they see?
What did I do?
What did I say?
 
Answers? No, so
Although I’ve never been a head banger
I want to badly butt
My head against theirs
Make them see
I’m like them
I am!
But I don’t know what to say
My tongue gets in the way
 
Children come
One is finally labeled
“Somewhat autistic”
What does that mean?
No information pre-internet
Never heard the word before
No idea I am
We’re all so different
But raise my children 
In the offbeat way
AKA, autistic
And their lives
Get drenched in different shades of rain
Thunder, lightning
Mudslides
 
What is Autism?
 
Autism is traffic jams
Oncoming headlights in
A foggy, dark night
Thunder drowning out your heartbeat
Automobile stereo’s base line ripping through your brain
 
Autism is thunder in your soul
As rain pours from your eyes
And lightning jerks your strings
 
Autism is knowing you are safest locked alone
In your room
Where no one can hurt you
But the curse is
Like everyone else
You crave society…
.
Poet’s note: Not all people on the spectrum are the same. I speak only about my life.
.
© 2020, Clarissa Simmens
.

CLARISSA SIMMENS (Poeturja) is an independent poet; Romani drabarni (herbalist/advisor); ukulele and guitar player; wannabe song writer; and music addict. Favorite music genres include Classic Rock, Folk, Romani (Gypsy), and Cajun with an emphasis on guitar and violin music mainly in a Minor key. Find her onAmazon’s Author Page, on her blog, and on Facebook HERE.

Clarissa’s books include: Chording the Cards & Other Poems, Plastic Lawn Flamingos & Other Poems, and Blogetressa, Shambolic Poetry.

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 some 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