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

Reasonable Expectations

When you meet a new doctor, you’re allowed only a few sentences to communicate everything about who you are, where you’ve come from, which details of your health history are the important ones, and to convince them that you can in fact be trusted to accurately represent your own health problems. That is, if you can get to a doctor in the first place. 

When I injured my sacrum in 2014, I didn’t see a doctor about it until more than a year into its slow healing. I didn’t have health insurance and I was pretty used to powering through health problems so I just dealt with it on my own. 

When I learned that my income was low enough that I would qualify for state-funded health care, it took me another whole year to overcome my anxiety about not understanding the healthcare system in order to apply, only to discover that there were no doctors in my city, not a single one, accepting new patients with my insurance. State-insurance cards by default included a spot for the name of the doctor who had been assigned to you. Mine was blank. 

I spent another few months overcoming my anxiety again in order to spend hours on the phone asking if anyone knew of a doctor who would still take me.

I found one and was told that her first new patient appointment was three months out but if I wanted, I could come in and wait and see if anyone canceled. It might be up to 4 hours of waiting and I might not be seen at all. The never-ending aching pain in the shape of a crescent on the left side of my lower back would not take four hours of sitting in waiting room chairs. I waited the three-months.

Black and white soft focus photo of a class stethoscope sitting on a muslin sheet. Photo courtesy of Hush Naidoo, Unsplash

By the time my appointment arrived, I had already done plenty of my own research on the many mystery health issues I was juggling. I told my new doctor that I thought I had Ehler’s Danlos Syndrome, a hypermobility disorder that can affect the connective tissue in your entire body. 

I told her about reading a book on EDS and placing 32 sticky notes among the pages, one for each symptom that I recognized in myself. I told her about my sacral injury that didn’t get better despite everyone telling me it would. I told her about manipulating my body and discovering that my feet and ankles collapse when I put weight on them and that my whole legs turn inward when I stand, and when I re-read the book, I saw a picture of someone with feet, ankles, and legs that looked just like mine do. I told her about how my friends make fun of me for the massive quantities of salt I put on my food, and how the book said that the recommended treatment for EDS related cardiovascular problems was increased salt intake. I told her about getting fillings as a teenager and squirming away as they drilled on my very much not numb teeth and reading in the book that people with EDS metabolize lidocaine faster than average and generally consider trips to the dentist as torture. I gave her my laundry list of places that I had pain, starting at the top of my body with ice pick headaches and ending with my feet that burned and stabbed when I stood on them at work for hours.

After listening to my pitch, the doctor had me stand up and poked and prodded me in my hips and legs, occasionally asking, “does this hurt?” I was wearing thick jeans over leggings so I barely felt anything. “Do you run?” she asked. I thought she was joking but when I saw she wasn’t, I just said, “No, I can’t.” She looked confused. She asked if I did this hip stretch like so and I said, “No, I can’t.” I attempted the stretch and showed her my very limited range of motion. She looked even more confused.

With little to no discussion of the source of my pain, she prescribed me a muscle relaxant and started to end the appointment. My heart sank. A muscle relaxant would not stop my joints from being unstable or help my sacrum get better any faster. It might even make me worse.

To her credit, the doctor noticed: “It seems like you’re disappointed. Was there something else you wanted to talk about?” I nodded and told her I had hoped for a more active and solution-seeking approach. I had been symptom managing for months. I wanted to finally get to the bottom of my health problems.

My therapist had warned me that I should prepare myself for push-back on my self-diagnosis. Doctors rarely take kindly to patients diagnosing themselves. I was prepared for disagreement, prepared for less interesting theories, prepared for testing and investigation before confirmation. 

What I didn’t expect was dismissal.

At the beginning of the appointment, I had been asked to rate my pain on a scale from 1-10, with 10 being the most pain I could possibly imagine. I had given a 1 for my wrist and a 3 for my hip. My doctor asked me what improvement I was expecting from level 1 pain in my wrist? “You need to have reasonable expectations about your goals here,” she said. “As you get older, your body is not going to work perfectly anymore. It’s never going to work like it did when you were fourteen. Things just… break down over time. That’s just how things are.”

Her words blurred and ran together, doubt flooded my brain and seeped under my eyelids. The pain scale isn’t designed to represent the range of pain levels and different types of pain that are common in a chronic condition, and she hadn’t asked me for the highs and lows of the week, she had asked me my pain level on a low-key low-impact day. Of course my numbers didn’t reflect an ongoing severe problem. My numbers only reflected how I happened to be feeling at that moment in time. 

But I was so overwhelmed by self-doubt that none of that clarity came to me. Was my life falling apart from normal amounts of pain that are a natural result of getting older? At 26 years old, was pain in every one of my joints considered normal? 

The medical practitioners that know me see me week after week describing the mountains I’m hurdling and almost never see me cry. When I do, they know right away that I’ve been pushed past my limits and that I am Not Okay.

But this doctor didn’t know that. The tears started coming and they wouldn’t stop, my voice breaking and trembling. 

Was it normal to experience a crushing sense of loss because I had to stop dancing, to protect my hip alignment, and I was never able to start again? What about the way my hand would seize and contract when I tried to play guitar for even a few minutes, and my inconsolable grief when it hit me that my wrist, just like my sacrum, was not going to get better anytime soon? Was it normal that I had an elaborate schedule –breakfast, hour long pain management routine, sit for 30 minutes, stand up for 15 minutes, sit for 30, stand for 15, repeat until too tired to stand– that I developed so that I could get things done and not end my day at 5pm crying from pain? What about the long hours that I stood at work, my sacrum throbbing, my feet and legs and arms and wrists aching, counting down the minutes and trying not to let the pain show on my face as I used my precious resources to cheerfully ask yet another customer if they wanted a bag today? Was that just a simple side effect of getting older? What about every tiny risk assessment, every conscious muscle engagement, every task that I said no to, every absolutely required self-care to-do added to my daily list, that had been my everyday reality for more than a year? 

Black and white photo of a woman’s bare back. She is hunched over, emphasizing the knobs of her spine. Photo courtesy of Jairo Alzate, Unsplash

She tilted her head sympathetically and said, “Have you been feeling depressed?” A passage from an article I read flickered through my brain: on average, women have to report significantly higher pain levels than men do before they are prescribed pain medication, and that instead, women were more likely to have their pain categorized as a mental illness. I remembered this briefly before saying, “I do have a history with episodes of depression but I have not been feeling like I am in one, no.”

The doctor proceeded to write me a prescription for an anti-depressant that she said also can help with pain. I blinked, confused. Hadn’t I just said that I wasn’t experiencing depression? I protested weakly that this didn’t make sense but she said, “You want to be active and try something? Well, let’s try something. Let’s try this!”

Tears were still falling down my face but I nodded, my brain still filled with white noise as she walked out of the room. Did she believe me that I was in pain? Did she hear the ways it was impairing my daily function? Is it reasonable to expect this level of physical difficulty at age 26? Did she listen to me at all?

I shakily walked out of the exam room, down the hall, and ducked into the bathroom. I put my face in my hands and cried silently, trying desperately to get a grip on myself. But I couldn’t. I was broken into a million tiny shards and there were too many to pick up in 10 minutes. I washed my face as best as I could and headed to the receptionist to make another appointment.  Their earliest slot was in five weeks. 

They asked me to fill out a feedback form about how well they had helped me today. I declined.


I cried as I walked to the bus stop. I cried as I bussed home. I cried as I walked up the stairs to my apartment and I cried as I walked in the door. This low-level crying was all I could do to keep from collapsing into uncontrollable sobs. Only when I reached my boyfriend’s arms did I let it all out. I told him everything and then I called several of my best friends and I told them the story again. I didn’t really stop crying for several hours, hoping each re-tellings would relieve the sensation that the foundation of my Self had cracked. At some point, I vaguely realized that the appointment had been traumatic and that I now had a new trauma to heal from on top of my already longer than average list.

In the weeks that followed, I learned that my friends with chronic illness, chronic pain and disabilities have all been traumatized by doctors visits; practitioners doubting them, assuming mental illness and sending them to psychotherapists, ignoring their files and giving them medication they were allergic to, delaying crucial treatments due to incorrect diagnoses, invasive procedures without consent, over and over and over again. They had long lists of experiences like mine. This was just my first one.


This article was originally published on yoppvoice.com as “26” on March 25th, 2017.

Kella Hanna-Wayne

KELLA HANNA-WAYNE(Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella 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, disability/illness

Interview with Secular Sexuality on Sex and Disability

A few months ago, Vi La Bianca, a previous guest writer for my blog Yopp, invited me to be on her YouTube show Secular Sexuality, a show that looks at every angle of sexuality that you can think of, with an emphasis on noticing how mainstream US culture has shaped our opinions and practices around sex. I was invited specifically to discuss the intersection between sex and disability, which is a topic many people are deeply uncomfortable with. 

I wanted to share and recommend this episode because, in addition to offering a lot of very useful advice to fellow disabled people and their partners about how to engage with sex and dating, a large portion of the show is devoted to discussing important issues that disabled people face in general. 

This is not the first time I’ve been invited to an interview of this kind, and while my interviewers tend to be highly knowledgeable about activism and social justice, it always takes them by surprise just how much is happening within the disability activist community that they don’t know about. Disability rights are a severely neglected branch of social activism, even among some of the best and most thoughtful mainstream activists. 

So, if you’re looking to get a glimpse into this world of issues as well as a lot of information specifically about sex/dating and disability, I highly recommend watching this really fun and educational episode! The video is one hour and thirty-six minutes long, including two live callers who share their experiences of how disability affects their sex lives. Not Safe for Work themes and language are also covered. 

Here’s a brief summary of the topics we cover: 

General discussion of disability

  • the language used to discuss disability
  • a new modern framing of disabled people (covered in my recent article)
  • how we can improve the amount of access available to disabled people
  • ADA violations and the lack of input from the disabled community on accessible design
  • the intersection of being a woman in addition to being disabled/chronically ill
  • the hurdles of navigating the medical system (primarily regarding the US)
  • disability representation is fiction and media

Disability and dating/sexuality

  • the difficulties of dating while disabled
  • the issue of disclosure (”coming out”) as disabled
  • cultural resistance to the idea of disabled people having sex
  • the fetishization of disabled people
  • exploring your sexuality as a disabled person
  • communicating with your partner about how your disability will impact your sex life
  • putting your needs and physical safety first

You can watch the episode, for free, below. Enjoy!

If you are viewing this post from an email subscription, you may have to link through to the site to view this video.


Kella Hanna-Wayne

KELLA HANNA-WAYNE (Yopp!) is a member of The Zine core team and a co-host of this month’s blog series on illness and disability. Kella 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

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 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 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/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

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, 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 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 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 Art, Disability, Photography/Photographer, Wendy Alger

About my friend, Wendy Alger, Fine Art Photographer

WENDY ALGER (b. 1972), Chicago, IL, U.S.A.

Fine Art Photography

“Photography. It’s like music … It’s like your favorite song, something you can listen to over and over and over again. You try to explain it to some and you can’t. That’s the feeling it gives me. It’s like traveling and you want to tell everyone how great it was … and I have that experience every time I pick up a camera.” Wendy Alger

My friend, Wendy Alger, is a talented photographer, now still active though legally blind. Wendy pursued the craft of photography as a hobby until another friend of hers suggested that she become a photographer. Wendy thought that sounded just right and a natural thing to do since both her parents were photography enthusiasts. Wendy’s dad supported her new goal and gave her one of his cameras and some lenses. And so the story begins …

At the time when this adventure started, Wendy owned an old ’68 Mustang. She’d drive around, listening to music. When something called out to her, she’d stop and take photographs. Thus Wendy began to learn what subjects appealed. “I photographed everything that felt right and compelled me to keep taking photographs.” Slowly, she discovered the artful photographer within and her own distinctive style. “I enrolled at the Academy of Art University in San Francisco and trained there, where I learned manual SLR. I also learned how to use a dark room.”

I am always surprised and delighted with the remarkable results Wendy manages despite the limitations of her sight due to retinitis pigmentosa. Quite a bit older than Wendy, I cut my own photo visionings using a Brownie and have not graduated much beyond that. My camera is digital, but it’s just a simple budget-wise P.H.D. (Push Here Dummy) camera.  Wendy, however, uses newer, better quality and more complex equipment than mine and tells me that these newer technologies facilitate the practice of her craft.  “I use a digital camera and I can check my pictures on the camera instead of in a dark room. Nowadays, my darkroom is a laptop, Photoshop and Photoshop Lightroom. This allows me to transform and print my images at home. I also use visual memory … I remember feeling to get through a photo session.”

Wendy’s long-term goal:

“To have my artwork displayed in the same building as Walker Evans in my lifetime – not after – during! My vision problems are not stopping me. I never even think about that. After I was diagnosed and as soon as I got the money I bought my digital camera.”

Here is a small gallery of Wendy’s recent work with a digital camera. The photo at the head of the post and the first one below are self-portraits. Wendy’s photographs are copyright protected. You can see more of her work HERE. She’s now in the process of updating her site.

– Jamie Dedes

© photographs, 2011 Wendy Rose Alger, All rights reserved

Photo on 2014-03-31 at 17.16 #3kif_0858-1JAMIE DEDES (The Poet by Day)~ I am a medically retired (disabled) elder and the mother of a married son. The graces of poetry, art, music, writing and reading continue to evolve as a sources of wonder and solace, as creative outlets, and as a part of my spiritual practice. My Facebook pages are: Jamie Dedes (Arts and Humanities) and Simply Living, Living Simply.

The photograph to your right, Portrait of a Photographer, which some will recognize as the photo I used for Wordless Wednesday, is a portrait of Wendy. I guess it might be more correct to say it’s a portrait of the camera not the photographer, though it was meant to capture the spirit in which Wendy works. I took the photograph some years ago when we spent an afternoon at Union Cemetery in Redwood City, Wendy pursuing art and me as chauffeur and tag-along doing the best I could. My own portrait here is a selfie captured using the photo feature on my MacBook. Happy interNational Photography Month.

Posted in Disability, Essay, Michael Watson

Still Here: Blogging Against Disabilism

Lone-CyprusToday is Blogging Against Disabilism Day. Disabilism is a Gimp term for the ideology and practice of discriminating against people with disabilities. Discriminatory practices of all forms appear to be on the rise in North America. In the U.S., where all programs that protect minorities are under attack, there has been a growing chorus of calls for the dismantling of the Americans With Disabilities Act.

Contrary to much of the Disabilist propaganda, life remains very difficult for most people with disabilities. Much architectural infrastructure remains inaccessible, and the unemployment rate for persons with disabilities is double the rate of the non-disabled. It is likely most people with severe disabilities have given up looking for employment and are thus not counted amongst the unemployed.

The 90’s were, throughout the Western World, a time of disability activism. In the U.S., many of the activists were Polio survivors. At the time, the everyday world was, far much of the disabled community, simply inaccessible. If one used a wheelchair, one simply could not get on a bus! (The playwright and disability theorist, Kaite O’Reilly recently discussed both the disability civil rights movement in the U.K. and the workings of Disabilism in a marvelous lecture. I encourage you to watch.)

Until our civil rights movement, people with disabilities were largely invisible. When I am in a wheelchair in a crowded space, say a museum, I remain invisible, as people literally trip over me. When I am in India, I am a very visible anomaly: a professional person navigating the world on crutches. (An Indian colleague recently told me that disability cannot be discussed at the moment in India. It is too hot a topic.) Most disabled people in India stay home.

Back in the early 90’s Bill T. Jones, the MacArthur Award winning choreographer, created a piece entitled, Still Here.  The dance gives expression to the lived experience of persons with life threatening conditions, including disabilities. It created a furor! In 1997, Bill Moyers interviewed Bill T. Jones about Still Here. It is one of my favorite hours of t.v.. Not long ago I wrote a post about Still Here and its continued resonance for Native people and folks with Disability. The sad thing is that there are a great many people in North America who would like us Gimps and Natives to be gone, or to at least stay home and out of the way.

Beyond the idea of Disability as label or stigma, is Disability as lived experience. I have spent much of the past few months addressing Polio related issues. Working with a Polio knowledgeable therapist has helped me revisit the illness and its aftermath, understand some of the new challenges I, and other Polios, face, and acknowledge some of the losses associated with Polio. The therapist has given me information to read and poked sore areas of my psyche with skill and kindness.

I am deeply appreciative of the resources, kindness, and training she, and other Polio clinicians have showered on me. I am also grateful to all those who helped me understand the ways the trauma of Polio, and the able-bodied gaze, have shaped my thinking and life. At times. I find myself both relieved and filled with sadness and grief; there are so many losses.

There was a time when I was able, a before and after Polio, although that was many decades ago. My therapist likes to remind me that those without disabling conditions are temporarily abled; disability is always possible. Perhaps that possibility keeps many anxious and avoidant of persons who are clearly disabled. One may pass but probably one cannot hide from one’s disability or from the losses it brings to life. Nor can one hide from Disability itself; Disability stalks everyone.

Oddly, I have the sense of Polio as present and immediate, even in a world where it is thought, like winter’s snow, to have melted away almost to extinction. Polio is a virus, a piece of RNA that infects cells, reproduces itself in enormous quantities, and leaves the cells weakened or dead. It can present as little more than a stomach upset, or leave a person paralyzed or dead.Whether we acknowledge it or not, Polio remains an active presence in our world, especially in the lives of survivors and their families.

As I write, a flock of geese flies over, headed north, and the radio news announces a polio outbreak in Afghanistan in which at least 25 persons have been made ill. I have been rereading Anne Finger’s Elegy for A Disease, and the book lies open on the sofa. It is both a personal and a social history of the disease, an illness with a long history of influencing human lives. I have the sense Polio is sitting with me as I write and ponder, an alive, thoughtful presence, vibrant and well in spite of our efforts to eradicate it. Polio doesn’t seem to be going anywhere.

We Gimps are Still Here as well. We, too, are not going anywhere.

– Michael Watson, Ph.D.

IMPORTANT NOTE: In acknowledging of this day, its importance, and of the challenges disability bring to the lives of the disabled and their families, we are opening Mister Linky for you to share links with us and with readers to your own posts on disability or to a post you’ve read that has moved you to a greater understanding. These do not have to be recent posts. As an alternative, please feel free to leave a link in the comments section.

© 2013, essay (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

Posted in Disability, Essay, General Interest, Mental Health, Michael Watson

The Olympics, Polio, and the Medicine Wheel, Part Two

community-seatingThe Olympics have come to a close; the Paralympics follow. Saturday evening Jennie and I watched a Gimp DVD. She is planning to show it to her Expressive Therapies class, along with some material from Bill T. Jones. Its been a while since we last saw Gimp in performance so revisiting their work was a revelation.

The Paralympics is a much-needed, if under-reported competition for athletes who happen to be disabled. The Gimp Project is a collective of dancers, able-bodied and disabled. The Paralypics is a contest; Gimp is a collaboration exploring the world of disability experience.  The first seeks perfection, the latter revels in the beauty of imperfection. The Paralympics pursue inclusion, abet separate and unequal; Gimp tells stories, often casting light on the processes that marginalize and exclude.

There is a remarkable invisibility surrounding these processes, although many activists, academics, and artists have sought to illumine them. It matters little whether these forces  exclude persons on the basis of ethnicity, race, disability, or other difference, the effect is consistent. The systems are pervasive and largely invisible; they are also profoundly human.

The Medicine Wheel holds all of human experience, offering us a view of life as a whole. There is a place on the Wheel for everything that can be encountered, even a space for our collective fear of otherness and contagion. The Wheel reminds us that we will each encounter all that is, whether directly or through the experiences of others. Our fates are inexorably woven together; the fate of each is that of all.

As we meditate on the Wheel we are encouraged to consider that while they seem real, both safety and isolation are illusory, transitory states. The last few months I have found myself wandering the wilderness that is part of the Post Polio experience. Recent health concerns continue to bring up ancient unresolved feelings, along with worries about the future. I have been repeatedly thrown back to the fear and pain of the acute illness and post-illness recovery, and the social isolation imposed on me as a Polio. I am also reminded the effects of the virus continues to impact my life and thus the lives of those I hold dear.

I’ve been exploring the experience of Post Polio through the wisdom of the Wheel. For me, now, Post Polio lies in the North, the place of aging, teaching, and eventually, making preparations to return to the Spirit World. (The North is also the place of preparation for rebirth!) The journey is complicated as I find myself trying to make sense of my nearly lifelong disability from a place on the Wheel where it is also my task to embrace a declining body.

Part of the task is to acknowledge my fear of erasure. We live in an epoch in which Polio was eradicated; we are, for most purposes, a Post-Polio world. I was taught I had survived the virus and should get on with life, ignoring, as much as possible, the devastation to my body and psyche. Yet the path of forgetting and ignoring is fraught with difficulties; the way of assimilation or “passing” is thorny. The normative prescription offers the possibility of inclusion, yet to follow that road is to participate in a collective act of erasure, to become invisible, and thus lose Self.

Every human being comes to a place where s/he is vulnerable; each of us eventually faces the treat of erasure and the powerful emotions that accompany that threat. In a culture addicted to perfection, and dismissive of difference and need, such moments carry added fear and shame. How odd such an essentially human experience is marginalized, leaving so many to face the North filled with loneliness and dread.

As a society we increasingly relegate the task of accompanying folks on the journey through the North to the health care profession and the clergy. As a result, we have marginalized the insight and wisdom that may accompany disability, experiences of trauma, and aging.  In doing so we create great suffering for the very young we profess to idolize, for we deny them context. How are they, in the face of ceaseless messages about the centrality of competition and perfection, to know they are all loveable, all sacred, beautiful, and desirable in their humanness and imperfections?

Our collective focus on perfection sells products and drives our economy, yet blinds us to the fate of our neighbors and the world. Our deeply held collective desire for safety encourages us to abandon our elders, young people, and children, threatens our very being as a species, and steals our Souls. Still, as prophesy insists, we have options. We can risk relearning the wisdom of the elders, symbolized by the Medicine Wheel, accept the complexity and terror of being human, and journey together into a Sixth World. There are, if we make it so, seats for all at the table.

– Michael Watson, Ph.D.

© 2013, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

Posted in Disability, Essay, General Interest, memoir, Mental Health, Michael Watson

The Olympics, Polio, and the Medicine Wheel, Part One

Snowy-MorningEditor’s Note: This is the first of a two-part piece on Perfectionism originally posted on Dreaming the World. Part II will post here tomorrow.

I am an elder, and as such I am given the task of teaching and supporting the young. On the Medicine Wheel of this lifetime I am in the Northwest, the place of honoring the challenges of my life, understanding them as best as I am able, and sharing what I have learned with others. Perhaps you will share your thoughts about the experiences I share below; I would greatly value that.

We, along with many others, spent a good deal of time during the past two weeks watching the Olympics. Over time we noticed, especially from NBC’s coverage, that the commentators seem to believe winning and perfection were all important. This is a sad thing. One does not have to watch much before one becomes aware the announcers are ceaselessly pointing out errors and failures. Rather than empathy for the competitors, one is barraged with demands for perfection and minute details about failure to achieve such.  There is very little celebration of the athletes who fail to meet the announcers’ or judges’ criteria.

This hits home on two fronts. The first is cultural. I was raised to appreciate the efforts of all. Winning is fun, but should not shame others. Nor should anyone be left behind after the games are over. Further, perfection was considered suspect. One was advised to build imperfection into one’s art and welcome it in one’s life. After all, we are not the Creator although we are aspects of His/Her creation. Only the Creator can be perfect, and it is likely even S/He makes mistakes; as we are reflective of the Creator this suggests that even mistakes can be good and holy. The unbridled pursuit of perfection endangers the individual and the culture, the community and the ecosystem.

The second part is I am a survivor of Bulbar Polio. My phsysiatrist says I am “a walking quad”; rather than disparaging, this is a simple statement of truth. I have severe neurological injuries; Polio destroyed motor neurons all over my body. My arms and hands have considerably diminished capacity; my legs and feet lack strength and mobility; breathing can be a challenge. I am not perfect by the dominant culture’s standards.

Add to this my Native American heritage and the soup becomes thick indeed. I once heard a man, who understandably thought he was with other Europeans, say something like,  “There is nothing more pathetic than a disabled Indian.”  What are we to do with that? Indeed, what are we to do with NBC’s virtual silence on the topic of the Para-Olympics?

Herein lies the difficulty. One one hand I was encouraged to accept  and honor imperfections. On the other, as a Polio survivor I was taught to do my level best to pass as normal, to overcome limitations, and to forget my illness and its  aftermath. Additionally, as a child in a Native family that was actively passing, I was taught to be invisible, a lesson that surely applied to Polio as well.

It is a profound challenge to resist the limiting messages of our families and the dehumanizing ones of the dominant culture. I have done my best, yet I have also spent much of my life seeking to achieve others’ views of perfection, even though not even normalcy was not an option.This has been painful.

I don’t know whether you have ever thought about the Wounded Healer.  In Traditional cultures ill youngsters are often expected, should they recover, to become healers. I use the term “recovery” loosely. Youngsters who face and survive catastrophic illness may not have the same physical capacities as their normative friends. Yet their illness may also give them abilities and insights not readily available to others. When the child is ill the healers do their best to aid. They also seek to discern the nature of the illness; often such illness are understood to be calls from the spirits, initiations into the realm of healers. When there is a spirit call, training in the healing arts accompanies recovery. The illness frequently leaves a footprint in the life and work of the survivor; he or she becomes a wounded healer, knowledgeable about many of the territories and challenges that accompany illness.

This is a different model than the academic learning focus of the West. Of course, the two paths are not mutually exclusive. Indeed, they may intersect, even overlap at times. Both address the needs of the body. Some Western trained healers have adopted the Indigenous understanding that the soul and psyche must also be attended to.  (Milton Erickson, although not to my knowledge Indian, comes to mind as someone who walked both roads well.)

I have come to this point on the Medicine Wheel by living my life from within this severely injured body. This is a sharp contrast to the physically perfection of elite Olympic athletes, or the health and wealth gurus we see on PBS and on innumerable infomercials. The television sages convey the message to us that illness, poverty, loneliness, and all other forms of suffering are moral failures. They do not speak this directly, rather they hold up their carefully managed perfection as a mirror to our human frailties. They offer advice, even salvation; for a fee we can be just like them. But I, and many others, cannot.  The very lifestyles they espouse harm us, and endanger our precious planetary ecosystem and all that lives therein. Where, I wonder is their wisdom and compassion?

We approach the Spring, the East in the Abenaki view of the Medicine Wheel, the place of rebirth and awakening. I am curious how my changing understanding of this beloved, traumatized body will blossom in the coming year.  I wonder whether our culture can set aside the deeply held values of independence, competition, and perfectionism that shaped the  our country (the very ones espoused by those television commentators). Can we own our imperfections, and acknowledge the harm we have inflicted on ourselves and so many others, inside and outside our country? Can we embrace those who suffer illness, poverty, displacement, abuse, or isolation?

As we follow the journey of the sun into the East, we are invited to begin again, to open our eyes and practice compassion and understanding. May we  find the courage to do so.

– Michael Watson, Ph.D.

© 2014, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.

Posted in Music

A Gift to Share With You … whether or not you are celebrating Christmas

WISHING EVERYONE

MUSIC, POETRY, ART

~ HEALING ~

From The Bardo Group Core Team

John Anstie

Naomi Baltuck

Terri Stewart

Corina Ravenscraft

Jamie Dedes

Josepth Hesch

Karen Fayeth

Victoria C. Slotto

Liz Rice-Stone

Michael Watson

Niamh Clune

Priscilla Galasso

Lily Negoi

Charlie Martin

Posted in Essay, Michael Watson, theatre/spoken word

Beyond Godot

Winter TreeI first encountered Kandinski’s Concerning The Spiritual In Art while in college. While I did not necessarily experience his sense of the mystical nature of line and color, I did share, in my way, his passionate hope that art could be a vehicle for spirituality and social change. Over the years those ideas have informed my visual and performance work.

Although I no longer perform often, I continue to think about issues of theatre and performance. At the center of my theorizing, aesthetics meets concerns about ethnicity, race, class, gender and disability. In all my years of university training (BFA, two MA’s, and a Ph.D.) discussions of the power relationships inherent in aesthetic standards rarely arose. I venture to say that they never arose in my arts courses. Even those anthropology and psychology courses devoted to consideration of race, class, or gender largely ignored aesthetics as culturally mediated. Now I routinely explore the cultural construction of aesthetics with students in my courses, although they are not always comfortable with the material.

Recently I have been engaged in discussions about the societal and political dimensions of aesthetics with a variety of performance practitioners. These folks tend to land in one of three groups: teacher/artists, performance venue administrators, or performer/directors. Clearly, these categories frequently overlap, yet they remain useful. When in conversations with performer/directors I find we can usually comfortably discuss integrating persons of diverse races/ethnicities and genders into troupes, as long as the performers share an aesthetic. Perhaps not surprisingly in our present economic climate, they seem more concerned with audience than inclusion. Often, this means that performers are excluded based on disability or class. (Interestingly, some performance space administrators seem more interested in the narrative and performative power of pieces, and book innovative, inclusive companies, seek out audiences.)

Disability becomes an issue when performers bring physical or cognitive challenges to theatre. Performance making requires the creation of narrative structure if the piece is to convey meaning. The director shapes the narrative, and in so doing privileges some aesthetic choices over others. (The performance space can also shape the narrative; many stages are inaccessible!) The result is either more, or less, inclusive of both performers and audience members. (One may argue that the history of the Avante Guard, in which I was trained and participate, is one of theorizing inclusion while establishing ever more restrictive cultural elites.) Generally, directors seem to feel more comfortable making accommodations for performers who contribute to the director’s formal choices, rather than building performance around the considerable skills of the disabled, or other performers who demonstrate difference. This is understandable, yet problematic. After all, performance is about storytelling, and aesthetic choices inevitably convey the subtext for the director’s (and often the culture’s/society’s) preferred narrative. Exclusion is inevitable and it matters.

An example of  the exclusionary capacities of aesthetics took place in New Orleans a couple of years ago when a famous director from the Northeast brought his version of Waiting for Godot to town, ostensibly to make a statement about the plight of local people immediately following Katrina. Godot is a centerpiece of the Western theatre cannon, and the play in question was greeted with much critical applause. Yet the commentary about the play largely ignored the conditions of the performances. One of my acquaintances, a theatre person from the Big Easy, critiqued the play thus (my paraphrase) : “The piece sold out the Dome, but there were almost no people of color inside. Many people of color and local theater and performance artists were in the lobby trying to purchase tickets. It was embarrassing. On top of that, the play is about doing nothing, about futility. Here in New Orleans people were active after the storm, trying to help one another. We still are. Neither the media nor the play showed that. Local theatre people here have made a lot of performances showing the bravery and generosity of the people here during and after the storm, but those performances get little attention in the national media. Yet the production of Godot was in all the national media.”

Clearly the Avante Guard’s use of social engagement can be highly problematic, especially when performance is done for (some say “to”) culturally specific audiences, for instance, the New Orleans experience of Godot. Or consider a group of non-disabled actors creating and performing a show with disability themes to an audience of disabled persons. Let’s say many of  the stories utilized to create the performance had been gleaned from persons who were now in the audience. When asked why there are no disabled performers, the director responds, “We could find no disabled performers who could this physically demanding piece.” The performance may have been visually stunning and spiritually uplifting, but also conveyed a strong message of inaccessibility. The medium is, ultimately, the message. (Interestingly, in the Eighties, Bill T. Jones was harshly criticized for including persons with life threatening illnesses in his performances of Still Here, even thought those participants publicly praised Bill and spoke about the work as life changing.)

I’ve been exploring spirituality in the arts, and issues of inclusion and aesthetics since the 1960’s. There are now many people of color, disabled artists, and folks across a diversity of classes, ethnicities, and genders thinking, speaking, and writing about cultural coding in performance. That’s good; we need those voices. Many of those folks are making art that arises out of their thoughtful exploration of these issues. Often, these works are filled with spirit. I like to think we are, like the good folks of New Orleans, no longer waiting for Monsieur Godot.

Next time you attend a theatre or other performance event, consider paying attention to the cultural codes being enacted. What are the values implicit and explicit in the piece? Whose on stage and who isn’t? What description of reality is given preference? Are you invited to drink deeply from the well of Spirit? I hope you’ll let me know what you discover.

– Michael Watson, Ph.D.

© 2013, essay and photographs (includes the one below), Michael Watson, All rights reserved

michael drumMICHAEL WATSON, M.A., Ph.D., LCMHC (Dreaming the World) ~ is a contributing editor to Into the Bardo, an essayist and a practitioner of the Shamanic arts, psychotherapist, educator and artist of Native American and European descent. He lives and works in Burlington, Vermont, where he teaches in undergraduate and graduate programs at Burlington College,. He was once Dean of Students there. Recently Michael has been teaching in India and Hong Kong. His experiences are documented on his blog. In childhood he had polio, an event that taught him much about challenge, struggle, isolation, and healing.