Harriet McBryde Johnson (1957-2008)

“I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn't die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don't know what to make of us.”

Born in Laurinburg, North Carolina on July 8, 1957, Harriet McBryde Johnson was one of five children born to parents who were college lecturers.  A  sister died of the same progressive neuromuscular condition that she herself experienced.  Thanks initially to the family’s economic security and later to her own professional career, she benefitted from the personal assistance and the power chair that enabled her to participate in American society.  She always knew that she was one of the privileged ones, who could escape what she called the “Disability Gulag”.

From an early age, Johnson realized that she would have a limited life expectancy.  She was an activist by the time she was a teenager at special school, trying to get an abusive teacher fired.  Like thousands of other disabled people, she thought that television charity telethons – such as the annual Jerry Lewis event on American TV – were demeaning and counter-productive.  Later she would describe herself as holding the world endurance record for protesting the Jerry Lewis telethon.  In return, Lewis described activists such as Johnson as the equivalent of Lebanon’s Hezbollah.

Harriet McBryde Johnson earned undergraduate and postgraduate degrees in history and public administration in Charleston.  After graduating from the University of South Carolina Law School in 1985, she set up in private practice as a lawyer, where she specialized in welfare and civil rights claims for poor people with disabilities.  She was also active in the Charleston Democratic Party, first as secretary and then as chair.

Johnson’s intelligence and confidence made her an ideal advocate for disabled people, not just in the courtroom but also in the political arena and through the pages of America’s newspapers.   She also had a wry sense of humour, as another extract from her writing demonstrates:

“It's not that I'm ugly. It's more that most people don't know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that's the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I'm Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin.”

Beginning in April 2001, her most famous intervention was a series of encounters with the Princeton philosopher Peter Singer.  A utilitarian, Singer has notoriously challenged the value of life, and suggested that it should be permissible for severely impaired newborns to be killed. In 2002, she debated publicly with Singer, and subsequently published “Unspeakable conversations”, an article in the New York Times, the source of the self-description above.  Johnson pointed out that: “The presence or absence of a disability doesn’t predict quality of life.”  Drawing on her own experience as someone with a neuromuscular impairment, she argued: 

“We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”  

Singer’s theories may lead him to obnoxious conclusions on the topic of disability, but he is no bigot: on other issues he is very progressive.   He is also of course formidably intelligent.  On the one occasion that I debated with him on radio, I found him a rather cold and intimidating opponent.  By matching him in person and in print, Johnson made a huge impact on all those who heard or read her, enabling millions to access and understand the arguments that the disability rights organization Not Dead Yet was propounding.  In particular, as an atheist Democrat, she helped non-disabled people understand that arguments against assisted suicide and selective abortion came not only from Christian conservatives, but  also from the disability rights community.

Johnson published two books.  The first, a memoir called Too Late to Die Young, was published in 2005 and contains eloquent descriptions of living with personal assistance, of fighting prejudice and of the value of life as a disabled person, what she called “bearing witness to our pleasures”.  In the preface, she wrote:

“For any Charleston lawyer, any Southern lawyer for that matter, storytelling skill comes so close to being a job requirement that maybe it should be tested in the bar exam.  Beyond that, for me, storytelling is a survival tool, a means of getting people to do what I want.”

A novel, Accidents of Nature, about a girl with cerebral palsy who had never known another disabled person until she went to camp, was published in 2006.

When Harriet McBryde Johnson died two years later, aged only 50, the fact that she had obituaries in both the New York Times and the Wall Street Journal demonstrates the impact her life and writing had had on American culture and politics.

Further information

Unspeakable conversations

It’s our story interview 

William Soutar (1898-1943)

William Soutar was born in Perth, Scotland, in 1898, son of John, a joiner, and Margaret.  At school, he excelled on the sports field, and led a pupil strike.  At Perth Academy, he began to develop his literary skills.   Later he would recall:

“That was my eighteenth year while yet the shadow of war was unacknowledged. Then I was one of the fleetest at the Academy; one of the strongest; first in my year at most things; I was writing poetry; I was in love; I was popular both in the classroom and the playing field. I never reached this condition of living fullness again except in brief moments.” 

In 1917, he joined the Navy and served for two years.  By the end of his military service, he was beginning to suffer from skeletal pains.   He went up to Edinburgh University, initially to read medicine, but then changed to English.  At this time, Soutar sent some of his poems to Hugh MacDiarmid, who described him as already being in the top fifty Scottish poets.  Soutar's first volume of poetry was published before he graduated in 1923.  But by then his symptoms had spread from his legs to his back, which prevented him pursuing his plan to become a teacher. 

The family moved house to 27 Wilson Street, now a museum to the poet.  His condition continued to worsen, and eventually he was diagnosed as having ankylosing spondylitis, an incurable spinal condition.   On getting his diagnosis,

‘suddenly I halted in the dusk beside the pillars of West St. George’s, Edinburgh, and stood for a moment bareheaded, saying over to myself, “Now I can be a poet.” ‘

He would become a leading figure of the Scottish Literary Renaissance.  As time went on, more and more of Soutar's poetry was written in Scots:

The Makar

Nae man wha loves the lawland tongue 


but warstles wi' the thoucht- 


there are mair sangs that bide unsung 


nor a' that hae been wroucht. 



Ablow the wastrey o' the years, 


the thorter o' himsel' 


deep buried in his bluid 


he hears a music that is leal. 



And wi' this lealness gangs his ain; 


and there's nae ither gait 


though a' his feres were fremmit men 


wha cry: Owre late, owre late.

By 1930, he was confined permanently to bed.  His father made adaptations so he could live comfortably at home in a ground floor bedroom with a large window looking onto Craigie hill.  

Whan Gowdan are the Carse-lands


Braw are the Grampian Mountains


Whan simmer licht is still;


And gowdan are the Carse-lands


Ablow the Corsie Hill.


Yonder the gowdan steeple


Spires up frae the auld toun,


And the brig wides through the water

Owre far awa for soun’.


And its easy in this quiet,


Sae gowdan and sae still,


To lippen that a’ the world


And your ain hert will hale.

Soutar would lie propped up in bed, in jacket and bow tie, and receive a constant stream of visitors, many of them leading literary figures, and when they went away, he would write poems.  He kept a diary, published as Diaries of a Dying Man, and one entry reads:

'I see eight people have called this week...this means at least twenty hours at least spent in mediocre conversation. My God!'

He yearned for emotional and sexual release, but lived under the protection of his fiercely religious parents.

When his parents adopted a five year old orphan cousin, Evelyn, this spurred Soutar to write poetry for children, what he called bairn-rhymes, a volume of which were published in 1933,  For example:

The tattie-bogle wags his airms: Caw! Caw! Caw!
 
He hasna onie banes or thairms:
 Caw! Caw! Caw!

We corbies wha hae taken tent,
 and whamphl’d round, and glower’d asklent,


Noo gang hame lauchin owre the bent:
Caw! Caw! Caw!

For a long time, he was best known for these short verses for children.

Willie Soutar was a socialist and a nationalist.  He wrote in 1932:

‘My life’s purpose is to write poetry – but behind the poetry must be the vision of a fresh revelation for men.’

In July 1943, he was diagnosed with tuberculosis, and by October he was dead, aged only 45.   The editor of his diaries wrote:

“His poetry was the prize wrested from a battle against death and despair which he fought for half a lifetime.” 

Seeing life with clear eyes, knowing joy as well as bleakness, Soutar himself summed up life in a poem:

Autobiography

Out of the darkness of the womb


Into a bed, into a room:


Out of a garden into a town,


And to a country, and up and down


The earth; the touch of women and men


And back into a garden again:


Into a garden; into a room;


Into a bed and into a tomb;


And the darkness of the world's womb.

Website

Ian Dury (1942-2000)

There’s been no shortage of disabled popular musicians (Ray Charles, Stevie Wonder, Gene Vincent), and even a good sprinkling of polio-survivor musicians (Judy Collins, Donovan, Joni Mitchell, Neil Young), but no other mainstream-successful singer-songwriter has ever explored disability and attitudes to disabled people as powerfully and memorably as Ian Dury.

Ian Dury was born in Harrow, son of a bus driver and a health visitor.  After the war, the family briefly lived in Switzerland, where his father was working as a chauffeur.   When the relationship broke down, Dury’s mother Peggy came back to England with her son and lived with her sister, a doctor.  Aged 7, Dury contracted polio, he believed from the Southend swimming baths: this was during the 1949 epidemic when the virus was rife and there was no vaccine.  The newly disabled child was to spend eighteen months in hospital, much of it immobilized in plaster, and then, braced with a caliper, spent most of his teenage years at Chailey Heritage Craft School in Sussex.

This residential institution had the explicit intention of toughening up disabled children to prepare the rigours of the outside world.  As well as the cruelty there was also, Dury reported, quite a few “pervs” on the staff.  Writing about polio and music, George McKay has suggested that the enforced isolation and immobility which young people experienced with the disease may have shaped their creative persona, through solitary introspection, as well as their emotional lives.   Dury later said:

“Being in that place is one of the reasons I talk the way I talk. Before that I talked not quite BBC. A third of the kids there were funny in the head as well as being disabled . . . The situation was that from within you got very strong, but also you got coarsened . . . There was a lot of behaviour that just don’t happen in the outside world. Later you pretend to be arty about it but when I was there, I was just there, it was real. Thinkin’ about it now, I realise it was fuckin’ heavy. It was like a hospital in one way, like a school in another way, and like a prison in another way.”

Because he was academic, Dury’s family managed to get him entry to the Royal Grammar School in High Wycombe, where he received further rough treatment because of his disability.  He passed O Levels in English Language and Literature and Art, and went to first Walthamstow Art College and then the Royal College of Art, where he studied under the pop artist Peter Blake.  His paintings of this time concentrate on gangsters or the female nude ("I was very interested in Trilby hats and tits").  Some were exhibited during summer 2013.   While Dury was subsequently to teach art at Canterbury College of Art, he decided that his talents lay elsewhere.  So instead, he recruited several of his students into his first rock band, Kilburn and the High Roads, which started gigging in 1971.

This first musical outing was a good pub band, as well as being a bunch of misfits and freaks who attracted attention for their look as well as their music.  But it was with his second band, the Blockheads, signed in 1977, that Ian Dury became a major British pop star.  His Stiff Records releases such as “What A Waste”, “Wake Up, And Make Love with Me”, “Hit Me With Your Rhythm Stick” and “Sex and Drugs and Rock and Roll” and albums such as New Boots and Panties!! topped the charts during the 1980s.  Dury’s gravelly delivery, the tunes of Chaz Jankel, and the punk/funk style were all part of the success, but the major factor must have been the wit and poignancy of Dury’s lyrics, a cut above almost all his contemporaries, except Elvis Costello.  He wrote and sang about ordinary English working class lives.  As Robin Denselow said in his obituary, Dury was

“one of few true originals of the English music scene, the only man to successfully combine the energy and excitement of rock 'n' roll and funk with the bawdy humour, wit and home-spun philosophy of music-hall and of his native Essex.”

From the start, disability was part of the story.  Dury faced opposition when he wanted to become a performer, and even when successful, record labels were adverse to him making his disability explicit, but he overruled them, as with his decision to appear in the 1979 “Rhythm Stick” video with his withered arm exposed.  The song “Dance of the Screamers” was about the rigours of physiotherapy. Dury explained: “It was called the screaming ward and you could hear people screaming on the way there, and it was you when you was there, and you could hear the others on the way back.”

Another song went:

Hey, hey, take me away


I hate waking up in this place


There’s nutters in here who whistle and cheer

When they’re watching a one-legged race

And a one-legged prefect gets me in bed

Makes me play with his dick


One-legged horn and he’s shouting the odds

Driving me bloody well sick.

Perhaps the most memorable example of Dury's engagement with disability politics came in 1981, the International Year of the Disabled.  This was a turning point in the history of the disability movement, with disabled activists walking out of Rehabilitation International to form Disabled People’s International.    Dury despised those patronizing attitudes too:

The Year of Our Disabled Lord 1981 I was getting lots of requests. I turned them all down. We had this thing called the ‘polio folio’, and we used to put them in there . . . Instead I wrote this tune called ‘Spasticus Autisticus’. I said, I’m going to put a band down the road for the year of the disabled; I’ll be Spastic and they can be the Autistics. I have [my band named the] Blockheads and that means they’re autistic anyway. And my mate goes, ‘No – Spasticus Autisticus, the [rebel] slave’. Great, I’m Spartacus. So I wrote this tune . . . [I]t wasn’t allowed to be played anywhere and people got offended by it – everybody except the spastics.

The resulting song included lyrics such as:

I widdle


when I piddle

’cos my middle

 is a riddle ...

I’m knobbled

on the cobbles

‘cos I hobble


when I wobble.

So place your hard-earned peanuts in my tin

And thank the Creator you're not in the state I'm in

So long have I been languished on the shelf

I must give all proceedings to myself

At the time, the song was banned by the BBC, but twenty years later it was to be part of the opening ceremony of the London 2012 Paralympics.

Dury was to have some success as an actor, with roles in films, TV and stage plays, and he also wrote a musical, Apples, staged at The Royal Court.  He turned down the opportunity to write the libretto of Cats, because, as he said, "Andrew Lloyd Webber is a w*nker”, thus saving his own credibility but losing out on millions.

Dury spoke out for Safe Sex, at the beginning of the AIDS epidemic, and during the 1990s, he served as a UNICEF Peace Ambassador.  However, he never became closely involved with the disability movement, and always aimed at the mainstream.  In the mid1990s, I remember filming a disability cabaret for Channel 4 in a London pub with various other disabled performers, with Ian Dury as part of the line-up.  Although he was friendly, he also appeared a bit bemused by the situation, and remained on the sidelines with a couple of his mates for most of the recording.

In 1996, Dury was diagnosed with colorectal cancer.  He died in March 2000, weeks after a final performance in aid of Cancer Backup.  Since his death, the reputation of this well-loved, acerbic, stubborn, difficult, singer-songwriter has, if anything, grown.  He was the subject of a biopic, and his songs were used as the basis for a play, Reasons to be Cheerful, by the Graeae Theatre company.  I think Dury differs from much of the modern disability movement because of his uncompromising willingness to name impairment for what it is.  He nails patronizing attitudes, but he also turns his unblinking eye on the difficulties and drawbacks of being a cripple.  And above all, he does it with humour.

Links

George McKay article
Ian Dury website