Lesson From Lorraine and Sue


Jo Somerset


 
© Copyright 2018 by Jo Somerset

 

 Photo of sunrise. (c) 2001 by Richard Loller.
This work traces the fortunes of two women – Lorraine and Sue (both close to me) – who were vociferous proponents for disabled people’s freedom.  Both had experienced polio in the 1950s epidemic in Britain. In tracing the web of their lives, I had to consider how to essay their lives where my (non-disabled) viewpoint did not drown out their voices. I contrived to do this by combining auto/biography/fiction: ‘auto’ elements are my own witness of their experiences, plus biographical sections concerning them, and fiction imagining scenes in their lives.  Themes of life and death were reinforced during the winter of 2017 as I crafted this piece. The warping caused by polio, by surgical stretching and correcting, and by the fake truths of social attitudes, were accompanied by the weft of their nemesis: the clever little virus that discovered how to thrive in the twentieth century alongside social prejudice, creating a double story which invokes indomitable voices that remain beacons today.

LESSON FROM LORRAINE AND SUE

I am inside two people’s heads, crawling around their cortexes and lobes, imagining what they were feeling at a time when I was barely alive. Bits of them couldn’t feel. But they could feel. Not as victims, sufferers, objects of pity. They were not destined to be confined or wheelchair-bound, although they were bound to fight for justice, and their freedom struggle would be a battle against confinement.

In 1956 they were children. They just knew to survive.

“NOTHING ABOUT US WITHOUT US!”
The dichotomy rumbles in my ears as I write about them, and they’re not here.

Prepare for death by living life, I say.
Make every exhale return a breath each day;


A breath only means something when it’s not there, when you fight for it, when you’ve missed it and fear grips you in case you can’t get the next one, when the iron lung looms – a coffin to save your life – but no-one’s there to put you in it, so you have to fight – alone.

You’re three years old and seven years old; you’re going to die. Today. Now. If you don’t heave
a sliver of life down your throat,
a tiny movement of your tiny tum,
in it goes and out it comes.
And slide.........
A whisper in your ear: “Yet, I’m ill; is poo.”

You wake. You’re still alive. At three you don’t understand, but age seven knows that flies die and hamsters are born.
Breathing means living. Lorraine knows it but she can’t say it. She knows it from the whoosh of air from her mother’s mouth as her eyes open. Lorraine blinks, tries out living.

Sue can say it but she’s got no breath to speak. Her mum says it instead: “Thank gawd for that, she’s awake.” Sue crinkles her eyes specially for Mum. A warm flutter from the doctor’s nostrils tickles her nose as he bends over and stares into her eyes.

The mums will return each day.

The daughters will live life.

*****

Me? Feared for centuries, my tribe. It’s not as if we kill everyone. We’re not that mean. Ok, we do attack children, it toughens ’em up. Having polio is really quite sociable. They’re all together in hospital, so if one pops off, the others still have someone to play with. Hey, if it weren’t for us, they wouldn’t be getting all those treats. So don’t have a go at me about being evil. We just like to have our fun, see how far we can take it with the little tykes.
That older one – bloody little fighter. Millions of us floating in the swimming pool - lovely little thing; within days she had the headache and fever. As soon as Nurse settled her into bed, we got right to work, multiplying like hell and zapping all those motor neurons so when she woke up she couldn’t move. Round one – victory to us.
We couldn’t keep it up though. Try as we could, this kid wouldn’t stop breathing. We swarmed over the brain stem till that little girly was gasping in tiny shallow puffs, the iron lung machine ready right by her bed, but hell’s bells, she won that one. No shame in that. Like I said, we’re not vindictive, we just like to see how far we can go. It is our purpose in life.

*****

Polio epidemics were caused by cleanliness. Before modern sanitation, people rarely washed and threw their excrement into the gutter. Many people contracted the virus but built up immunity so their bodies dealt with it. Only a few had a full-bodied version of the disease which permanently affected one of their limbs. Polio flourished alongside capitalism. As living conditions gradually improved in the early twentieth century, frightening epidemics of ‘infantile paralysis’ took hold in the industrialised world. Capitalism’s message of building a better future for their children was belied by this enemy on the attack. The heyday of medical science, benefitting from swirling technological advance, loved the challenge. FDR1 contracted polio and hey presto! It was a field day for the ‘white coats’ sung about 50 years later by polio survivor Johnny Crescendo.2

The march of Progress (capitalism) continued hand in hand with the eventual eradication of polio in all but a handful of countries world-wide. Progress meant the end of paralysis.

II
Let painful tumbles presage a rise again.
While days will buffet, weeks will yawn and years will crumble,

Have you ever spent a week in hospital? Try a year. Try four months on your back with jelly where your legs were, and head bobbing on a floppy stalk. Try swallowing gloop – banana, strawberry, peach on Sundays – and dreaming of pickled cucumbers and chips. Try voraciously reading Enid Blyton with a torch under the blankets because there’s no alternative. This is Life and you have to make it work

It wasn’t months, it was years. It wasn’t once, it was repeatedly. It wasn’t dignified, it was being poked, prodded, twisted, pulled, incarcerated in plaster, peered at, talked about, pointed to – fascinating, advancing medical practice. It can’t even be called unbearable because it had to be borne.
And it was boring.

There were islands of good cheer without a doubt. Ineffable childish spirits would not stay down permanently. Sue passed her Brownies cookery badge by cooking an omelette from her hospital bed, prone, lying on her tummy. Every week her mum brought baked potato from home, wrapped in newspaper - a 3-hour round trip on the bus.
It wasn’t a life but it was their life so it was a life. The thirst for independence was hard-wired into them.
It was a physically demanding life. In Special School #2 Lorraine describes
“Rigid callipers locked down my eight-year old legs.”
She had fallen and the nurse refused to help her get up. She ends the poem:
“I sat on the floor, alone, wondering ‘what next?’”
Spinal fusion - the in-thing for surgeons - involved a year in hospital, often several attempts, with additional torture thrown in: a Milwaukee jacket for Sue (external) and Harrington rods for Lorraine (internal) to deal with curvature of the spine. On her first day back at school, Sue sat down on her chair and cracked her newly-fused spine. Back to hospital for another year.
That was a painful tumble all right.
III

Suck life-juice from puddles of despair.
It's yours. It's there. Prepare by living.

What do you do when your whole existence is topsy-turvy? You hardly see your family, yet your absence is a ‘ghost’ in their home – Lorraine’s brother’s words – or in Sue’s case, your sister resents your very existence because you take up so much time and parental energy.

There was plenty of misery, gob-fulls of despair. They got on with life.

Hospital-based children play from their beds. Nurses, or the more mobile children, would push the beds outside. They got O levels, after Lorraine’s years of hospital schooling, and Sue’s twice-weekly trips to night school because her special school only did CSEs. O levels were the passport to high school and out of the pattern-cutting career that was their destiny. When Lorraine returned home after a fantastic school trip to Paris, she discovered that her friends had found looking after ‘the cripple’ too much – a real kick in the teeth.
Somehow they found life-juice.
Sue told her careers advisor she wanted to be a poet. Later, in My Place, she regards with anathema the prospect of living
“In a place designed for people-like-us
Kept safely separate, away from it all.”
Instead she asserts:
“I want to live in the pulse-hot thick of it,
Where the nights jive, where the streets hum.”
IV

Prepare by giving succour to hope's flicker
And find a hairs-breadth crack of light

Even when it wouldn’t be referred to as such, crip culture existed. There was solidarity, and symbols of freedom.
The noddy car, aka invalid carriage or trike, filled with petrol.
Bright clothes.
Sport: Lorraine won 99 medals for swimming and athletics from age sixteen to twenty-eight.
Jewish disabled people’s respite home for Sue when both her parents had nervous breakdowns.
Escape to University.
Boyfriends and wedding.
Walking and wheeling on the cracks.
V

To guide the little paths that make the whole
Endeavour valued, precious; only yours to hold.

The little paths had precious few wayfinders, yet Sue and Lorraine found their way despite the likes of Jimmy Savile. The nurses warned children to pretend they were asleep when he visited the ward at Stoke Mandeville. Sue’s poem ‘To Jimmy Savile’ depicted ‘two sharp incisors’ sucking dry ‘our life juices.’ Years later, the world dined out on the shockingly salacious details. Unimaginable yet real. Reality TV portraying artificial lives somehow opened the door to uncovering real lives that should never have happened, lives behind closed doors, unimaginable yet real. The children and their nurses knew it was real, but the public were too willing to believe a forerunner of celebrity culture. Who wouldn’t have wanted Jim’ll Fix It to engineer an encounter with Dr Who or Mohammed Ali?

Precious triumphs peppered precarious lives. On a country walk, the Brownies fixed it for Sue. They tied ropes to her wheelchair, and two lines of hauling Brownies pulled her up a hill. This crowning moment of delight gave Sue a precursor, a notion that helped her formulate the idea that the paths could be made, somehow.

Swimming (Lorraine) and singing (Sue) their ways to uniqueness, they pushed ahead, striving, found their own communities in Manchester and Birmingham through sport and feminism, and found work so they could be self-sufficient.

Navigating through simultaneously tremendous and treacherous family straits - fiercely supportive or dishearteningly divisive, depending on whether it was mother, father, sister, brother - they found community, love and work. They, only them, did this. When Joan Armatrading was singing “Me, Myself, I” (1980), Sue was a welfare rights worker in Birmingham and singing with The Red Hens. She is living downstairs in a 2-up 2-down house, washing in the kitchen sink and peeing in the outside toilet, with a weekly bath at the Health Centre; lonely. Lorraine, pregnant with her second child, is secretary of Manchester Disabled Athletes’ Club and earning money by china painting.

Both had friends, yet none of these knew - really knew - how precious, and how tenuous, was the life they had each created. That was the secret they held. Did they feel terror, like clinging to a granite mountainside? Or exhilaration akin to balancing on a tightrope? Or sheer relief at keeping their heads above water in a stormy sea? Exhausted, always on their guard, clinging, balancing, gasping and sometimes flailing. Friends didn’t want to know about the never-ending endeavour.

VI

In darkness feel a hint of dawning day,
Where lost gets found, and fears will founder.

Just like industrial workers consigned to production lines and subservience, disabled people resisted the pigeon-holes to which they were consigned. But while the weight of the trade unions rose and took on the might of capitalism, disabled people’s efforts at representation were mis-appropriated by charities controlled by non-disabled people, keeping firmly in a powerless place the individuals whose cause they supposedly championed. “Rights, not Charity!” and “Piss on Pity!” were battle-cries born from this place.

Late capitalism – post-Fordism, mass unemployment, youth rebellion, wars of independence, TV culture and electronic communication – brought a swathe of social reforms. Disabled people came late to the party, but come they did, articulate, eloquent, strident and self-organised. Neo-liberalism adapted to recognise the ‘social model of disability’.
Disability politics dawned in these two: via disabled athletics, Lorraine joined UPIAS3, and Sue collaborated with the co-counselling network of people with disabilities. The two of them coincided in 1985 in Manchester, where Sue landed a job in the newly-formed Equal Opportunities Unit and the Greater Manchester Coalition of Disabled People was founded.
We know that seeing the disabling society as the root of their problems made sense of their lives and gave them comrades, and disability culture grew to give expression to a whole way of being. Lorraine was involved in development of theory, political organizing. Talented at making things happen, she graduated through several jobs with GMCDP. Sue, donning the stage name Suna Polio, found her voice in the disability arts scene. Out of that life-threatening experience 35 years earlier had arisen an identity, a whole community, a culture.

I can speak about them but not for them. They speak for themselves.


And yes, we have adopted the social model and clung fast to it, like a life raft in a stormy sea. Is it any wonder? In the face of all the charitable, medical and welfare based power structures, not to mention the political ones we nave needed to challenge, we needed a rock to cling to; the social model has been that rock.

‘A Life Raft in a Stormy Sea’, p.21, Lorraine Gradwell, 2007
You know how life knocks me about,
You know what it takes to keep bobbing up,
You know how tired it’s possible to get.
You know because
You live there too.
….
Together we are not afraid of truths
That terrify,
Together we can plan the impossible,
Spin fantasies today
And make them happen tomorrow.

‘Needing Disabled People’, Sue Napolitano, 1995

Hope, fun, comradeship - these were features in their new worlds. In the early 1980s, both found a life partner where love, respect and children belonged. Daily struggles continued but something had been found, some bedrock, and they condemned their demons to founder in the spiky shallows of self-disbelief from which they had emerged.

* * * * *

Unexpectedly, little polio, excreted and buried, had its come-uppance. No-one had heard of post-polio and the debilitating weakness it brought. It was fifty years since the virus’ invasion.

Post-polio syndrome, a ghost of its former self, was lapped up by medics, although they were just babes. One of the problems in treating Post-Polio Syndrome was that many specialists who understood polio were now retired or dead. Although poliomyelitis was defeated, its spirit was back with the ghostly anagram “Yet, I’m ill; is poo.”

Tiredness, fatigue, muscle weakness, shallow breathing, here it is again, a ghastly reprise and a ghostly foreground to the backdrop of ‘the ideological attack on disabled people’ that Lorraine described, marching alongside austerity. Depressing. There used to be benefits but now there’s hardship.
Yet there are glimmers of hope.

VII

One day it ends. But only when the life
Was had, the breaths were drawn, the mark you made

How can I, who haven’t had to struggle with pain and breathlessness and weakness and crushing blues and tumours and a flickering heart, describe how the life was worth doing? Our two women waded and swam and bodged through the blithering mess pretty well until there wasn’t any more, just phut! Finished.

*****

While I’m finalising this piece, my partner's niece is killed - murdered - and suddenly all my well-organised thoughts on life and how it ends are thrown into disarray.  I’d been finding a way through my writing of how to make sense of lives lived and ending in the imperfect capitalist society, searching for the dignity and purpose of it all. Now, shockingly, here was a young life senselessly ended by the epitome of late techno-capitalism: an Uber driver. 
 
Life writing that comes alive with a death. This is the last time I will write about dying.

VIII

Never to be erased.

As late capitalism got later, neoliberalism became entrenched. From the 1980s onwards, an economy based on interdependence and community was gradually slashed to ribbons, intensifying after the millennium. The human was replaced by the automaton, the local by the global, the investment by the cut. For disabled people, a ‘sustained attack...... abolished or “reformed” [i.e. cut] the building blocks of an independent existence’4.

Lorraine and Sue left their mark on the world, on this earth, and it will always be there. They left children, poetry, organisations like Breakthrough UK, their spirit, the meaning they gave to life. Imagine if there had been no Sue, no Lorraine, none of the other disabled activists who’ve gone, we’d be 30 years behind.

It’s not just about life for disabled people, it’s about how our society was enriched. But now disabled people are under attack. Think I, Daniel Blake, multiplied by a million. Sue’s not the only one to be threatened with an institution after a spell in hospital, rather than returning home to live with spouse and children. Because it’s cheaper than providing home care. For a short while, those battles were won. Now, capitalism is putting the squeeze on by soaking up dissent and protest, co-opting it into a bureaucratic maze. The government is the minotaur in the middle of the labyrinth of intentional disempowerment.

Lorraine and Sue and all the others found ways for disabled people to articulate and stick up for their rights, to counter ignorance and barriers, to trek towards freedom. This isn’t a materialist argument, but it’s not humanist either. It’s “Rights not charity” AND “Piss on pity” combined. Justice not misery.

It’s not just about rights. It’s about the possibility of being human when the odds are stacked against you, when dignity is denied.

Not everyone makes it.

“Life is hard, then you die,” said Sue’s mum.

Death is part of life. Life is what you make of what gets chucked at you. It’s all about the glimmers that Sue described in ‘Dreams’.

Notice your daydreams.
The faintest wisps of fantasy
Floating through your thoughts
Bear the secrets of your life.

It’s another lesson about how to live, like the lesson from Lorraine overleaf.

Lesson from Lorraine Gradwell

Prepare for death by living life, I say.
Make every exhale return a breath each day;
Let painful tumbles presage a rise again.
While days will buffet, weeks will yawn and years will crumble,
Suck life-juice from puddles of despair.
It's yours. It's there. Prepare by living.
Prepare by giving succour to hope's flicker
And find a hairs-breadth crack of light
To guide the little paths that make the whole
Endeavour valued, precious; only yours to hold.
In darkness feel a hint of dawning day,
Where lost gets found, and fears will founder.
One day it ends. But only when the life
Was had, the breaths were drawn, the mark you made
Never to be erased.

5th September 2017

R.I.P. Sue Napolitano 1948 - 1996
Lorraine Gradwell 1951 – 2017
Becky Dykes 1987 - 2017

Sources:
A Dangerous Woman: Poems by Sue Napolitano (GMCDP Publications, Manchester, 1995)
A Life Raft in a Stormy Sea: Everyday disability politics rooted in the social model – Lorraine Gradwell (TBR Imprint, Manchester, 2015)

1 US President Franklin D. Roosevelt had contracted polio at the unusually late age of 39.
2 Johnny Crescendo, aka Alan Holdsworth, b. 1952 Salford, UK, singer-songwriter-poet, author of “Where Did You Get That Leg?” which depicts attitudes towards his impairment
3 Union of Physically Impaired Against Segregation
4 ‘Attack of the Assisted Suicides and The Sharp Bite of Austerity’ – Brian Hilton, Coalition, Summer 2017, p. 10

I live in Manchester, England, with my (civil) partner who is co-mother to our five adult children.  I am a historian, writer and poet.  Most recent publication is  Pushing the Boundaries of 1980s Feminism in a Northern English Town, published in Northern History, March 2018.  Currently I am a MA student in Creative Writing at the University of Salford.

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