Remain Strong

Frida Kahlo is my third choice for The Purple Hermit Hall of Fame, my regular feature on disability and resilience.  I first discovered her paintings when I was a mature student at Art School.  I was drawn to the surrealist images, folk art style and vibrant colours.  It was rare to see such powerful images of pain and disability.  Frida’s work was autobiographical.  She was fearless in her honesty, exposing vulnerabilities, her emotional and physical suffering. But at the same time there was a joyousness in her painting.  Frida Kahlo was a passionate woman.  She loved people and animals, she loved the world.

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The Wounded Deer by Frida Kahlo

When I learned more about her life-story I was struck by the many similarities with my own and she became one of my artistic and personal influences.  Frida was born in Mexico in 1907, just three years before the start of the revolution.  Her father was a German immigrant who ran a photography business and her mother was Mexican.   Frida contracted polio at the age of six.  She missed time at school and was bullied by other children.  She was set apart from siblings by her illness which left her with a wasted limb, one leg shorter than the other.  Her father began to take a special interest in her and taught her photography, philosophy and literature.

At the age of eighteen Frida was involved in a horrific street-car accident which left her with severe, permanent injuries and a life-long legacy of health problems and chronic pain.  Surgical interventions by doctors were disasterously unsuccessful.  She had to abandon her education and her ambition to become a doctor.  She spent months in recovery and in isolation, confined to a bed where she began to paint using a specially made easel with a mirror.  Her work explored identity and included many self-portraits.

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Self-portrait with the portrait of Doctor Farill by Frida Kahlo

In 1927 Frida joined the Mexican Communist Party where she met her future husband, the famous muralist Diego Rivera.  Throughout her life she was politically active campaigning for peace, equality and the promotion of Mexico.  She chose to dress in traditional Mexican clothes as a gesture of  support for her native culture and a rejection of U.S. ideological dominance.  However, later in her career she travelled and work in the U.S. where her art was enthusiastically received.

Diego and Frida had a turbulent relationship punctuated by extra marital affairs on both sides.  At one point they divorced and later remarried.  Frida was a sexually liberated woman having affairs with both men and women.  One of her lovers was the revolutionary Leon Trotsky.  She defied many social expectations of how women, let alone a disabled woman, were supposed to behave.  Even today, disability and sex is a taboo subject.  But Frida let nothing stand in the way of her passion and being true to herself. She used her experiences as a disabled woman in a positive way, channelling her pain into amazing art.  Towards the end of her life her health problems became more debilitating and she suffered greatly both physically and mentally.

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Self-portrait with Thorn Necklace and Hummingbird by Frida Kahlo

Kahlo pre-empted Tracey Emin’s controversial unmade bed installation by about fifty years.  In 1953 doctors had advised her not to attend the opening of her first solo exhibition saying she needed bed rest.  So Frida arranged for her four poster bed to be taken to the gallery and she arrived there by ambulance on a stretcher.  She stayed in bed while the party unravelled around her.

Since her death in 1954, possibly by suicide, she has been adopted as an icon by various political and feminist groups.  It’s strange that her disability is often minimised in biographies even though it was plainly part of her identity as evidenced by her own paintings.  Her art grew directly out of her experience of disability.  But perhaps it’s too much of a challenge for many people to reconcile negative stereotypes regarding disabled women and the vivid truth of Frida Kahlo’s life as a beautiful, charismatic and talented artist.

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Tree of Hope, Remain Strong by Frida Kahlo, 1946.

 

Unchain my Heart

Ray Charles is the second musician I want to celebrate in my regular slot on resilience and disability.  He defied stereotypes and broke down barriers in music, race and public perception of the blind.  He did not allow others to diminish him because of his disability and was true to himself.  He became a stronger not a weaker person because of his blindness.

Ray Charles experienced trauma in childhood when he witnessed his four year old brother drown in a laundry tub, leaving him with a life-long sense of guilt.  Shortly afterwards Ray lost his sight due to glaucoma.  His mother instilled tremendous self-worth and encouraged him to tackle challenges.  She made him promise to never let anyone or anything turn him into a cripple.  She would say, ‘You’re blind, you ain’t dumb; you lost your sight, not your mind.’  In 1937 his mother sent him away to a Special School for the Deaf and Blind in Florida.  In the same year she died. Ray learned to read Braille music and quickly developed his musical talent, refusing to be labelled or exploited because of his blindness. He insisted,  “there were three things I never wanted to own when I was a kid: a dog, a cane, and a guitar. In my brain, they each meant blindness and helplessness.”

Ray Charles refused to play racially segregated concerts and contributed financially to the Civil Rights movement as well as blind and deaf charities.  His music was sometimes considered controversial, merging the genres of gospel, rhythm and blues, country and jazz.  He also defied expectations of how blind men are supposed to behave by being a tremendous womanizer.  Many women were seduced by his charisma.  He fathered twelve children and married multiple times.

Ray had a heroin problem which he eventually overcame through Rehab.  He was resilient in the music business and in his private life.  Ray won many awards for his music and also received a star on the Hollywood Boulevard Walk of Fame for his achievements.   In 1994 he was honoured with the Helen Keller Personal Achievement Award, which celebrates individuals who have improved the lives of disabled people.  Ray continued working until his death at the age of 73 in 2004.

He is a role model for all of us, whether disabled or not, showing that adversity can make us stronger and that we do not have to be defined by the expectations of others.

 

 

 

Are you Spartacus?

Last week was Resilience Week according to the Scottish Government.  Citizens were asked to think about how well they would deal with any emergency situation such as terrorism, pandemics or power outages.  This got me thinking about the meaning of resilience.  Is it the same as ‘strength’?

The dictionary definitions are:-

1. The capacity to recover quickly from difficulties; toughness.

2. The ability of a substance or object to spring back into shape; elasticity.

So it occurs to me that people with physical or mental disabilities are more resilient than the non-disabled.  It’s through dealing and adapting to problems that we become stronger.  Living with any Disability is a test of survival skills.  It’s strange that society tends to dismiss disabled people as weak because I think the opposite is very often the case.  Just to get through one day can be as tough as climbing a mountain or winning a war.  Many non-disabled complain about the slightest of ailments and crumble when things don’t go exactly their way.  Any disabled person has to confront obstacles every single day, not least of which is discrimination and the patronising attitudes institutionalised within society.

 

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I’ve decided to do a regular feature on this blog highlighting famous people whose achievements were due to the resilience gained from being disabled.

The first of these is Ian Dury.  He had a difficult childhood after contracting polio, being brutalised by the healthcare and education systems.  But later he channelled this rage and energy into his music.  It’s doubtful that he would have written such unique and passionate songs if not for his experience of Disability.  He was unafraid of what people might think, unafraid to be different, unafraid to speak truth about his life.  He was one tough cookie.

Here is a YouTube video of Ian Dury performing one of his most controversial songs, Spasticus Autisticus which was banned at the time by the BBC and created a public furore.  Stick around when the video is over to hear Ian Dury interviewed about why he wrote the song and how he was influenced by the film ‘Spartacus’.

 

 

I would welcome your suggestions for other famous disabled artists, musicians, writers, scientists, explorers, etc, who deserve to be featured on The Purple Hermit blog.  Please leave a comment. Thanks.

On Pain

Your pain is the breaking of the shell that encloses
your understanding.

Even as the stone of the fruit must break, that its
heart may stand in the sun, so must you know pain.

And could you keep your heart in wonder at the
daily miracles of your life, your pain would not seem
less wondrous than your joy;

And you would accept the seasons of your heart,
even as you have always accepted the seasons that
pass over your fields.

And you would watch with serenity through the
winters of your grief.

Much of your pain is self-chosen.

It is the bitter potion by which the physician within
you heals your sick self.

Therefore trust the physician, and drink his remedy
in silence and tranquillity:

For his hand, though heavy and hard, is guided by
the tender hand of the Unseen,

And the cup he brings, though it burn your lips, has
been fashioned of the clay which the Potter has
moistened with His own sacred tears.

 

I was recently reminded of this poem by the Lebanese-American poet and artist, Kahlil Gibran.  He is one of the best read poets of all time, famous for his book The Prophet from which On Pain is taken.  Undoubtedly, this poem is stunning but is it helpful to those of us who suffer from chronic physical or mental pain? Is it inspirational or insulting? Gibran seems to say pain is an inevitable part of life (much like Buddhist philosophy) and we must try to see beauty beyond the suffering.  I’m not sure how realistic this approach is.  When one is imprisoned within a broken body or injured psyche how can one believe the pain will pass?  Do we really chose our pain?  I’m not at all sure….On the other hand to fight against the inevitable is a waste of energy and perhaps acceptance is the way out?  My reaction to this wonderful poem is  confused.  What do you think?

 

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Arterio Venous

Her country was besieged.
The Great Saphenous Vein,
a lonesome road to nowhere,
a waste-land, booby-trapped with incendiaries.
Scarpa’s Triangle sailed a quiet sea
and Hunter’s Canal lay stagnant.

Beyond a cotton screen of chrysanthemums
her body bore a map no longer secret,
sketched out in clumsy biro, red for arteries, blue for veins.
Red and blue make purple, she’d learned at school.
Legs splayed a landscape across the table,
roads and rivers marked
soft, pale flesh, inert on padded leather.
Like seagulls scavenging an empty shore
the white coats gathered in freezing stares
while she traced the tangle of petals,
leaves and stems interwoven beyond.

Pointless, she listened to foreign tales;
remembered a white horse
galloping circles in the wind,
her purple coat flapping open
as she ran down the road.

 

6 Bubble by Lydia Popowich

Revolt

Like the Battleship Potemkin, rebellion
arose in the lower decks, dark
whispering, small acts of sabotage,
a breakdown in the chain.
Then mutiny, paralysis
and the legs of war.

Like all revolutions, there was pain,
no longer running but stumbling
steps to emergency wards and scalpels.
Legless in a hundred waiting rooms,
the legs waited, abandoned by the ship.
They waited for orders, for rescue, for fate.
They plotted revenge and escape.

Like Tweedledum and Tweedledee,
the legs were not a pretty pair but easy to ignore.
Not the fashionable kind of rebels but survivors,
not stilettos but sensible shoes in a wide fitting,
not the soothing silk of stockings but skin
slashed by iron, rubbed raw by leather.
Battle scars saved
for the darkness of crumpled beds.

 

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Apologies for the Turtle

I

If I write about you, will you go away?
Your reptilian stare, leathery grin, chilling
skin follow me everywhere.  It’s disconcerting.
You keep popping up without warning,
that alarming sneer, so hoity toity!
Why don’t you piss off back
down deep? No-one will miss
you here.  You don’t fit in.

Dump the rubber shell suit, try navy blue
anorak, polyester trousers from Tesco.  Stop eating
strange fish. What’s wrong with mince and tatties?
Your body odour is hard to ignore, try
Impulse Sweet Smile.  Join the SWRI,
take up baking…I’m quite partial to a Gypsy
Cream.  And I’ve been meaning to ask, why
are there jelly fish on your lawn?

II

I’m old as the sea and twice as deep.
I was born in the land where memories sleep.
History will keep repeating the subsonic beep
of your fears. Like surf drawing the beach
I will return, to be hanged by the neck
till almost dead but never
quiet.

III

Being entirely ocean going, leatherbacks never encounter barriers in the sea that they cannot swim around.

‘They’re not used to any kind of restraint, they’ve never seen a wall,’ Jenny McCloud, the aquarium’s rescue director said to The Shetland Post.

‘They’ll continue to struggle, they’ll continue to swim forward.’

 

Memoirs of a Sea Pebble, Part 2

 

 

 

#MeToo

In the wake of the recent Harvey Weinstein sex scandal there has been an outpouring of stories of sexual abuse and harassment from every walk of life.  The problem is not confined to the glamour industries of film and music.  At last many ordinary women are finding the confidence to share personal stories of crimes that seem to be endemic in society. However, the sexual abuse experienced by disabled people still goes largely unreported.

It’s happening everywhere.  Behind immaculate closed doors in middle class suburbia, on council estates in the midst of apparently normal families, in the private consulting rooms of dentists, therapists  and physicians,  behind the garish flowery curtains of hospital cubicles, in ambulances, in care homes and the private spaces of vulnerable disabled people who are dependent on others for their essential needs. There have been reports of abuse in some residential homes but they are still seen as an aberration not the norm. The Jimmy Saville sex scandal in England revealed his abuse of disabled children at Stoke Mandeville Rehabilitation Hospital and Leeds Infirmary during the 60s and 70s.  He was called a monster but there was little or no investigation into the health workers who turned blind eyes to Saville’s horrific crimes for many years.

Hospitals, ambulances and Care Homes are supposed to be safe spaces where vulnerable people will receive the help and respect they deserve.  The sad reality is that some health professionals are free to use these spaces to abuse their power and seek sexual gratification.  Rape is more an issue of power than lust.  Of course there are also medical staff who are genuinely kind and dedicated to their patients but the underlying culture within hospitals enables abuse.  The sick are objectified as if they were broken machines, just a collection of symptoms rather than whole human beings with emotions. You become just another case number the moment you enter a hospital. Patients are expected to be ‘patient’, that is passive recipients of ‘care’.

Disabled patients are viewed differently to the non-disabled.  There is an unspoken assumption that their lives do not matter as much.  Disability is a metaphorical slap in the face of health workers, an uncomfortable reminder that they often fail to cure people, that they are not omnipotent.  Disabled people are an embarrassment, a deviation from the narrow definition of what constitutes ‘normality’ within the medical world.  Many doctors secretly implement a Do Not Resuscitate policy when it comes to severely disabled patients.  They constantly judge whose lives are worth saving.

In 1930s Germany 200,000 mentally ill and physically disabled people were systematically exterminated by the Nazi regime.  Doctors co-operated with this policy of murder.  Many did not think what they were doing was a crime.  They told themselves they were merely putting sick people out of their misery, mercy killings.  Disabled people were called “useless eaters”.

In other cases of abuse non-disabled people are free to walk away from their abuser, simply get another job or partner,  move on or even fight back, but what can a vulnerable disabled person do while literally trapped and powerless in a hospital bed or care home.  Who will listen if they speak out?  Complaints against hospitals are investigated by the same hospital. What hope of justice there?  Who will they believe, the patient or the doctor/nurse?  How can someone prove what has just happened to them during that ambulance trip to their outpatients appointment? How can a victim be confident there will be no repercussions to speaking truth?

There seems to be a tendency to disbelieve disabled people. There’s an underlying assumption we are stupid and not to be taken seriously.  A disabled woman accusing a medical professional of sexual harassment is often thought to be attention seeking and delusional.  After all, the common offensive assumption is that disabled people are by definition sexually unattractive and inactive.  Who on earth would actually fancy one of them? They must be making it up, they say.  Disability and sex is one of the last remaining taboos in our culture.  Physical and mental perfection are deemed essential to an active sex life.  How wrong they are and how blinkered.

 

1 Self-portrait, part 1 by Lydia Popowich

 

I will not begin to recount the multiple cases of sexual and emotional abuse I endured both as a child and as an adult from the medical establishment.  I will not list the many terrible stories I heard in private from friends and acquaintances.  You will need to read my poem to understand a little of my experience.

These appalling sex crimes are still happening today and it’s time for disabled people to speak out and say, ‘our lives matter’ and yes, #MeToo.

 

Leeds, 1976

The ambulance man’s striking
green eyes stroked the inside
skin of her teenage arm as she lay
strapped (for her own safety) on the reeking
canvas of another NHS.
If you’re lucky you’ll meet Jimmy!

She thought he was, maybe
trying to be nice (those alien
fingers electric…) No comfort

blanket,  suspended in L35, skeletal
traction, legs akimbo and knicker
-less (for her own hygiene), a monster pain
-ted by Hieronymus Bosch. The male charge
nurse’s watery grey eyes brought gin
secrets in a Barr’s Cream Soda bottle, hot
take-away through her open
window of gritty night.

She thought he was, maybe
trying to be nice (gin made her sick,
she liked Babycham).

The glass half
-full on the sunny side.  Always
look on the bright, turn a blind
eye to the other.  Cheer up, might never,

said the porter’s lizard pink
eyes taking her down to a strip
-lit basement, down corridors
lined with secret conduits.
If you’re lucky you’ll meet Jimmy!

 

Pills, Thrills and Cake

When I was nine years old the nurses put a strip of leather between my teeth to stop me screaming  from the pain of a spinal haemorrhage. That was the sixties solution to pain relief for children.

Since then I’ve tried many prescription painkillers doled out by doctors. Tramadol, Solpadol, Paracetamol, Co-proxamol, Codeine, Morphine, Gabopentin,…the list goes on.  Most of them did nothing for my pain levels but added to my health problems.  I would have more respect for doctors if they had the guts to be truthful about the side-effects of medication they prescribe.  But the majority of the medical profession exist in a state of self-glorification and denial of the reality of their patients’ experience.  Severe abdominal pain, nausea, dizziness, diarrhoea, slurring of speech, hallucinations, lack of coordination, mental confusion, tremors, blood clots, haemorrhaging, insomnia and various other delights await those who naively listen to doctors and swallow their little pills.

The only helpful painkiller I’ve ever had was Co-proxamol.  It enabled me to live an almost normal life.  There were no side-effects. I took it safely and without abusing the dose for twenty five years.  It was a miracle drug that helped thousands of pain sufferers in the UK, those with muscular skeletal problems in particular.

In June, 2016 the British Pain Society’s research revealed that chronic pain affects more than two fifths of the UK population, meaning that around 28 million adults are living with pain that lasts for three months or longer.  So it’s a scandal that the National Health Service, or more precisely the Medicines and Healthcare Regulatory Agency (MHRA) withdrew Co-proxamol from the market in 2005 even though it had been in common use for nearly one hundred years.  At first those who were unable to tolerate any other pain killer, like myself, were told they would be exempt from the ban.  They were placed on a Named Patient List which was supposed to ensure they would never be left without an essential drug.  In the following years all that has changed.  This list, if it ever existed in the first place, has been forgotten.  Since 2016 Co-proxamol has been taken away from everyone unless you have a doctor brave enough to risk his/her license by prescribing it.  (If something went wrong such a doctor could be sued).

The official reason for this ban is that Co-proxamol is linked to a high number of suicides.  But so are many other drugs that are still available.  And the irony is that doctors are now prescribing much more powerful and addictive alternatives such as morphine.  So rather than protecting patients with the ban they are leaving them to suffer without any pain relief or putting them at risk from dangerous drugs.  The overdose figures for Tramadol and anti-depressants have escalated since 2005.  The NHS saved over nine million pounds with the Co-proxamol ban.  It’s a cruel and heartless decision that should never happen in a civilized country.

I’ve found this post very difficult to write but I feel it’s important to publicize this issue.  The internet pain forums are full of heart-breaking stories by people who have had their lives ruined by the Co-proxamol ban.  They should not be forgotten.

My way of coping with pain levels is by concentrating on the positives in my life.  Art, poetry, Mindfulness Meditation, music, animals, spending time outside also help.  Some days are better than others.  This afternoon I felt so depressed due to writing this article I went back to bed.  The storm raging outside was also raging in my head.  I felt angry with the Establishment, the doctors, the Government, the ones who control how we live or whether we live at all.

In the film, ‘Cake’ Jennifer Aniston puts in a worthy performance as a woman dealing with chronic pain and grief.  It’s a tough film to watch.  At the turning point her attitude changes after the baking of a cake. And its true that little things really matter.  This afternoon when I finally stopped feeling sorry for myself I made blueberry pancakes.   I feel much better now!

Please sign a petition to the British Health Minister, Jeremy Hunt asking him to reverse the Co-Proxamol ban and restore hope to sufferers of chronic pain by clicking below:-

http://chn.ge/2ywrlmm

Thank you!

 

 

Wild Women

A spider has spun a web outside my kitchen window. Suspended by a silken thread she survives gales and heavy rain. I check for her every evening and breathe a sigh of relief that she’s still hanging on, waiting for her next meal and proving that small and delicate doesn’t mean weak.

******************

“Just because you think you can do something doesn’t mean you can actually do it.”  This was a comment I often heard from a nurse at a local hospital where I experienced disability discrimination.  That is so wrong.  Believing in yourself is eighty percent of the path to success.  Strength begins in the mind.  The subtle and not so subtle negative messages disabled people receive from society every day creates low self-esteem, weakens them so that many don’t even attempt to live full independent lives. And the same thing applies to women, even in this supposedly post-feminist age they are presumed to be the weaker sex.

Although there have been improvements in attitudes towards both disabled people and women in the last fifty years, both groups are still constrained by old stereotypes. Disabled people are supposed to be helpless, sad and stupid; women are supposed to be caring, domestic creatures mainly defined by their relationships.  Men are celebrated for their achievements, women for their appearance and how much they are loved.  Bold, successful women who take risks and defy the norms of marriage and motherhood are viewed as an aberration.  Their main role in life is still caregiver, not adventurer or pleasure-seeker. Their domain is the home and not the wilderness.

I’ve previously written about the image of the loner in film.  The old Westerns and wilderness survival movies such as Into the Wild, The Grey, All is Lost and The Revenant all have male protagonists.  I’ve struggled to find many female equivalents.  Loner women are not shown as mysterious heroines battling nature but as loveless misfits, bitter like Miss Havisham from Great Expectations, or victims of abuse like Carrie in Brian de Palma’s classic horror.  How much do these negative messages influence the aspirations of girls growing up today? Why can’t women run wild with the wind?

Its strange that even though we speak of ‘Mother Nature’ and ‘Mother Earth’ there are so few films exploring women, solitude and the natural world.  Here is my list so far.  Please leave a comment if you can think of any others.

‘Here Alone’ is a recent offbeat film about a young woman named Ann (Lucy Walters) who struggles to survive after a weird epidemic decimates society. She leads an isolated life and battles the threat of bloodthirsty survivors who were infected and lurk outside the forest.  Although her life is hard she is clever and successful at living off the land with limited resources.   She has experienced loss and trauma but still exists in harmony with the beautiful landscape.  Later in the story she meets up with other survivors but is ambivalent about joining them.  The shock ending shows the real threat is from an unexpected source.

‘Wild’ features Reese Witherspoon in a brilliant performance as Cheryl Strayed, a young woman driven to a crisis by the loss of her beloved mother (Laura Dern) and the break-up of her marriage. She decides to halt her self-destructive behaviour and put her life back together again. With no outdoors experience or training Cheryl sets out alone to hike the Pacific Crest Trail, a distance of over one thousand miles.  This film is a female equivalent of Into the Wild, Sean Penn’s moving film about Christopher McCandless.  It’s also based on a true story and has an episodic structure with flashbacks revealing the backstory.  However, Wild is an astounding film in its own right and has an upbeat ending.

 

‘Alien’, directed by Ridley Scott and ‘Aliens’, directed by James Cameron are sci-fi horror movies but could also be described as woman battling against a hostile environment.  Sigourney Weaver as Ripley is the ultimate female survivor, tough and intelligent.  Although she is at heart a loner she doesn’t avoid relationships and takes on a mothering role towards an abandoned child in Aliens. She also loves her cat Jonesie!

The 1994 film Nell is about a female hermit played by Jodie Foster who has lived her entire life in an isolated mountain cabin in North Carolina where she has developed her own language. She eventually becomes a curious object to be studied by psychologists who try to integrate her into society.

The Hunger Games film series consists of four science fiction dystopian adventure films based on the novels by the American author Suzanne Collins.  It stars Jennifer Lawrence as the reluctant but fearless survivor of a man-made hostile wilderness.  Contestants are forced to kill each other in a televised game designed to distract the masses from the injustices of real life.  (So a bit like the reality TV shows that clog up our screens today!  The Hunger Games films are popular with teenage girls who will, hopefully, grow up less afraid than earlier generations to embrace life and venture freely into the Wild.