The Queer One

Writing recently about the film My Left Foot, I found the following passage in the book written by Christy Brown, who was disabled by cerebral palsy when he was still a baby. When his mother noticed something was wrong with him and she consulted doctors, 'They assured her that nothing could be done for me. She refused to accept this truth, the inevitable truth - as it then seemed - that I was beyond cure, beyond saving, even beyond hope. She could not and would not believe that I was an imbecile, as the doctors told her. She had nothing in the world to go by, not a scrap of evidence to support her conviction that, though my body was crippled, my mind was not. In spite of all the doctors and specialists told her, she would not agree. I don't believe she knew why - she just knew, without feeling the smallest shade of doubt... Finding that the doctors could not help in any way beyond telling her not to place her trust in me, or, in other words, to forget I was a human creature, rather to regard me as just something to be fed and washed and then put away again, Mother decided there and then to take matters into her own hands. I was her child, and therefore part of the family. No matter how dull and incapable I might grow up to be, she was determined to treat me on the same plane as the others, and not as the "queer one" in the back room who was never spoken of when there were visitors present.'

Those words of Christy Brown's, 'the "queer one" in the back room,' were chilling to me because I encountered just such a person myself a few years ago. I was momentarily visiting the house of a neighbor here on my Philippine island. I use the word "house," but it was a shack made out of whatever materials were available - part plywood, part corrugated roof (used for one wall), part bamboo, etc. The roof was thatched grass. There was no furniture, there were three rooms for what I thought was five people: a woman named Maricel and her husband and their three small children. But all the while I was sitting there in that impossibly small sala, unbeknownst to me, there was another occupant, Maricel's eldest daughter, who was lying quietly concealed in the back room. From what I managed to find out later, this child had had cerebral palsy as a baby and suffered the same disabling effects as Christy Brown. Except this child, named Christina, hadn't the advantage of a mother who was confident enough in her intelligence to not hide her away from the world, depriving her of an education and the prospects of a full life. This was also true of people with other disabilities. I knew two more people in the village, a man and a woman, who were deaf and who never married - as if there was a fear that the disability would be passed on to their children.

In one of the stories in the second volume of Turgenev's wonderful A Sportsman's Sketches, the narrator describes an encounter that is so strange, one feels that it must have been based on the author's experience. Out hunting one morning, the narrator looks for some momentary shelter from a sudden rain shower:

"I turned along this path; I reached the beehive. Beside it stood a little wattled shanty, where they put the beehives for the winter. I peeped into the half-open door; it was dark, still, dry within; there was a scent of mint and balm. In the corner were some trestles fitted together, and on them, covered with a quilt, a little figure of some sort.... I was walking away....

'Master, master! Piotr Petrovitch!' I heard a voice, faint, slow, and hoarse, like the whispering of marsh rushes.

I stopped.

'Piotr Petrovitch! Come in, please!' the voice repeated. It came from the corner where were the trestles I had noticed. I drew near, and was struck dumb with amazement. Before me lay a living human being; but what sort of a creature was it?"

He then describes to us from whom - from what - the voice was coming:

"A head utterly withered, of a uniform coppery hue--like some very ancient holy picture, yellow with age; a sharp nose like a keen-edged knife; the lips could barely be seen--only the teeth flashed white and the eyes; and from under the kerchief some thin wisps of yellow hair straggled on to the forehead. At the chin, where the quilt was folded, two tiny hands of the same coppery hue were moving, the fingers slowly twitching like little sticks. I looked more intently; the face, far from being ugly, was positively beautiful, but strange and dreadful; and the face seemed the more dreadful to me that on it--on its metallic cheeks--I saw, struggling...struggling, and unable to form itself--a smile."

He discovers that the person lying there in the shed is a woman named Lukerya: "I did not know what to say, and gazed in stupefaction at the dark motionless face with the clear, death-like eyes fastened upon me. Was it possible? This mummy Lukerya--the greatest beauty in all our household--that tall, plump, pink-and-white, singing, laughing, dancing creature! Lukerya, our smart Lukerya, whom all our lads were courting, for whom I heaved some secret sighs--I, a boy of sixteen!"(1)

She describes to him how she came to be as she was, transformed by her "misfortune." She had gone out in the moonlight to admire a nightingale and had a bad fall. She says that she felt something had broken inside her. She took to her bed and slowly changed into the "creature" he saw before him.

Ever since I first read the story decades ago I have been haunted by that woman lying alone for days and weeks in a shed where her family, at a loss about what to do for her, had placed her, looking in on her every day. Reminded of her by Christy Brown, I read the story again. I managed to locate, simply by typing the names "Lukerya" and "Turgenev" in my search engine, an article online from the Journal of the Royal Society of Medicine that offers a diagnosis of Lukerya's condition: "We have come to the view that Lukeria's features are all consistent with scleroderma (systemic sclerosis) of the diffuse type." The authors also offer insight into the impact that Lukerya's condition had on her psychological state. Starting with her description of her state of mind, which is unusually cheerful given her circumstances, they concluded that:

"It is noteworthy that despite the chronicity and disabling
nature of her condition, Lukeria displays none of the expected
behavioural features. Indeed, the narrator is amazed by 'the
almost gay manner in which she was telling her story, without
groans or sighs, never for a moment complaining or inviting
sympathy.' She gets enjoyment from helping the orphan girl to
learn singing: '“I've been teaching her and she's picked up four
songs already.”' She uses such distractions to cope with her
disability.'“Yes, I sing songs, the old songs, roundelays, feast
songs, holy songs, all kinds! I used to know many of them after
all; and I haven't forgotten them.”' She demonstrates a strong
internal locus of control as well as valuing interaction with
other people. She tells us that 'people must help themselves'.
Lukeria also uses reverie as a form of coping:

'“Sometimes I lie by myself like I am now—and it's just as if
there was no one on the whole earth except me. And I'm the
only living person! And a wondrous feeling comes over me, as
if I'd been visited by some thought that seizes hold of me—something
wonderful it is....It comes out like a cloud and pours its rain
through me, making everything so fresh and good.”'

This is an example of 'dissociation'—a term that embraces minor
events such as day-dreaming through to more extreme states where
individuals 'remove' themselves mentally as a coping mechanism.
Dissociation can be a positive experience for individuals coping
with trauma or other distress. Dissociation permits the isolation of a
traumatic experience until the individual feels able to cope with it."

The striking aspect of this research paper is its thoroughness. If you look at the credentials of the first two contributors of the report, they speak to their specialties in physical and psychological illnesses. The third name, Nigel North, is followed by a homely "PhD". Mr. North's contribution to the report is its literary content, which has significant bearing on the broadness of its scope. He provides for us some valuable background on the writing of the stories in Turgenev's Sportsman's Sketches:

"Although Living Relic was not published until 1874 (to raise
funds in a year of famine in Russia), it almost certainly relates
to the times described in A Sportsman's Sketches published
between 1847 and 1852, and therefore before the emancipation
of the serfs. Turgenev, born in 1818 and brought up on his
mother's estate at Spasskoye, south of Moscow, was aware of
the injustices of life for the serfs under the Tsarist regime. His
experiences at Berlin University made him an advocate of
progress in the Western European mode.

We have presented Turgenev's Lukeria as a likely case of
scleroderma/systemic sclerosis. We do not know that Turgenev
had any special interest in medical matters (although he is
certainly able to laugh at doctors' expense in this tale), or of
any acquaintance of his who had this type of illness. But his
description is so precise and life-like that we feel it must have
been based on someone he knew. Scleroderma had been
described at the probable time of writing (1850–1870)—
especially in French publications although the earliest
known description is Italian. The systemic nature of the
diffuse form of the disease was not recognized until the 20th
century.

While Turgenev's stories are much loved because of their
intriguing descriptions of his characters' personalities and
their interactions with one another, his Sportsman's Sketches
threw into relief the plight of the unenfranchized serfs of
Russia at that date and what westernized minds saw as
appalling social injustice. Turgenev was consequently regarded
as subversive and was effectively exiled to France. In Living
Relic , however, Lukeria's plight results not from social injustice
but the vagaries of nature; indeed her 'owner' (Pyotr's mother)
arranges for her to see a doctor and offers hospital treatment.
Turgenev's epilogue for the story, whether the suffering was
manmade or natural, was taken from his fellow-Russian poet
Tyutchev's stanza: 'Homeland of suffering: thou art the land of
Russia'."(2)

Not just Russian serfdom, but poverty and ignorance resulted in the isolation of Lukerya from society. Neither knowing what afflicted her nor what on earth to do with her, she was put away in an isolated shed, just as Maricel's daughter was put away in "the back room." In the U.S., such persons would be provided with the proper care that would grant them as full a life as they were able to live. To deny them that would arouse an outcry of protest. But we Americans enjoy the luxury of a rather more humane view of people with disabilities. Or so we like to pretend.


(1) Constance Garnett's translation.
(2) "Turgenev's 'living relic': an early description of scleroderma?" by Richard M. Ellis FRCS FRCP, Rupak Moitra MRCP, and Nigel North PhD, Journal of the Royal Society of Medicine, Aug 2005. The article can be found here.