Sunteți pe pagina 1din 22

This article was downloaded by:

On: 25 November 2010 Access details: Access Details: Free Access Publisher Routledge

Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37- 41 Mortimer Street, London W1T 3JH, UK

Mortimer House, 37- 41 Mortimer Street, London W1T 3JH, UK Journal of Religion, Disability & Health

Journal of Religion, Disability & Health

Publication details, including instructions for authors and subscription information:

The Road to Nowhere

Boris Krivoshei a a St. Petersburg Oruzheinika Fedorova Str, Russia

To cite this Article Krivoshei, Boris(2001) 'The Road to Nowhere', Journal of Religion, Disability & Health, 5: 1, 53 — 73

To link to this Article: DOI: 10.1300/J095v05n01_05

PLEASE SCROLL DOWN FOR ARTICLE

This article may be used for research, teaching and private study purposes. Any substantial or systematic reproduction, re-distribution, re-selling, loan or sub-licensing, systematic supply or distribution in any form to anyone is expressly forbidden.

The publisher does not give any warranty express or implied or make any representation that the contents will be complete or accurate or up to date. The accuracy of any instructions, formulae and drug doses should be independently verified with primary sources. The publisher shall not be liable for any loss, actions, claims, proceedings, demand or costs or damages whatsoever or howsoever caused arising directly or indirectly in connection with or arising out of the use of this material.

Downloaded At: 07:19 25 November 2010

The Road to Nowhere:

The Viewpoint of a Father of a Child Who Has Down Syndrome on Human Rights of Developmentally Disabled Persons Living in Russia

Boris Krivoshei

ABSTRACT. This essay focuses on the feelings and insights of a father of a child who has Down syndrome. It addresses issues surrounding hu- man rights of persons with developmental disabilities, challenging the current laws in Russia, and calling for a life of co-citizenship and co-ad- aptation. Life of persons “jailed” in Psycho-Neurological Institutions is evaluated and compared to the former and more beneficial asylums once situated in Russia. The essay is an emotional plea of a father, for his son and others like him, to his people and the world. [Article copies available

for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: <getinfo@haworthpressinc.com> Website: <http://www.Haworth Press.com> © 2001 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Psycho-Neurological Institutions, intellectually dis- abled persons, love, asylum, idiot Russia, parents, schools, genocide, so- cial rehabilitation, civil rights, integration, adaptation, welcome, God

People, whose intellect is essentially disabled, have the ability of a clear-cut simulation of the world in which they live. They are given to

Boris Krivoshei, GAOORDI, St. Petersburg Oruzheinika Fedorova Str., 3, 191123 Russia (E-mail c/o Jelena Vahakuopus: jelena.vahakuopus@famr.fi).

Journal of Religion, Disability & Health, Vol. 5(1) 2001 2001 by The Haworth Press, Inc. All rights reserved.

53

Downloaded At: 07:19 25 November 2010

54 JOURNAL OF RELIGION, DISABILITY & HEALTH

kindness and they feel they are treated with kindness in return. They are filled with love and exhibit wonderful tenderness. They sense that same love and tenderness in return. They are gifted and they lust to demon- strate their talents, provided you believe in them and are willing to meet their aspirations halfway. Yes, they can also be aggressive if you drive them to a state of aggressiveness–if you throw them into the abyss of cruelty that reigns in our Psycho-Neurological Institutions (PNI). There has been so much done in our country to make the intellectually dis- abled alienated from our own lives. No, we did not throw them down from high cliffs (by no means!) as it had once been the case in ancient Sparta. We did not embark them and then push away the boats from shore as it had been done sometimes. But, instead, we devised Psy- cho-Neurological Institutions. Their huge multi-story buildings rushed to the skies at will of people obsessed with ideas of “all equalism.” The gist of these ideas is quite simple. It means that “how they live” does not matter for intellectually disabled people because they are not people at all, but beings. A man lives while a being merely exists. But the brainmasters of “all equalism” have made an error: PNIs did not manage to become a sort of dump for human-beings, they became a dump of human destinies, an em- bodiment of our indifference to the fate of a mentally retarded person. We threw him out to the fringes of life because we kept noising all around the world that we had succeeded in creating a new Soviet man, a builder of the society where all people were equal, all except those who could not accommodate a sound spirit within their defected bodies. Such a body cannot take part in a sports parade. Such sort of a body should not exist because it must not exist. Therefore, they hid it in PNI’s. Thus, in the late 20s, a state sponsored program, which I would call “Out of sight, out of mind,” was adopted. The program was not ap- proved by anyone though it is still in action and determines our state policy relative to the intellectually disabled people. What have we in the end? In all civilized countries, a process of phas- ing-out and scaling-down of institutions intended to house the people who have intellectual disabilities is taking place. It had become evident all around the world that such “institutions” cannot be accepted and that they are incongruous with the ideas of civilization and humanism. Such “institutions” are beyond any control and are cost-ineffective. But, we are turning a deaf ear to all arguments. We are obsessed with striving to produce all in gigantic scales. The situation when 500-600 people are crowded within a PNI is a norm for us, while the very idea of having asylums with 25-50 inmates makes those, who are at the helm of power,

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

55

uncomfortable. It takes place just in Russia, where the Open Social Care Movement, embracing all those who are lonely and deprived, had been set up and was thriving for so many years. All has fallen into oblivion We forgot under what human conditions our “feeble-minded” brothers and sisters had lived in Russia. We forgot as well how much they were able to do and how much we are indebted to them. One of the earliest asylums in Russia was inaugurated in 1881 at Udelnaya railway station in the suburbs of St. Petersburg. It was the asylum named after St. Emmanuel. It was intended for intellectually disabled and epilepsy-stricken children. There were 16 children altogether in the asylum: 11 boys and 5 girls. One rouble 82 kopecks per day were allotted to support one child. As a comparison, a cow cost 2-5 roubles at those times. A boy of 11-years-old, son of a miller from the Gdovsky district, happened to be the first inmate of the asylum. He was “126.5 centimeters high, with small hands and legs, flabby joints, a wandering look, completely inca- pable of standing on his feet, only able to move his legs with someone’s help, dumb, with no explicit mental development at all. In three months, some strength enhancement became evident because the boy was trained to eat a dense food, particularly, meat. The next 9 months, he started to walk on his own, though in a shaky way and with his feet tap- ping, sometimes he fixes on things, even starts playing.” It was from the St. Emmanuel’s asylum that taking care of the men- tally retarded children had stemmed in Russia. By 1917, there were 5955 mental cases who were taken care of in St. Petersburg (population:

2,018,500), including 444 children whose age was under 15. In accor- dance with the norms of our day, those 6,000 people would have been housed in 5 PNIs where they would be “taken care of ”until their last

breath

gurated 26 asylums under the auspices of the Empress Mary Depart- ment Children Asylum Council (“for children of all estates and Christian faith, with age ranging from 3 to 20 years”), 71 asylums at various charity societies and 34 asylums at churches; totaling: 131 asy- lums for 6,000 mental cases! Compassionate was the soul of the Rus- sian people for their deprived brothers and sisters, indeed! What was the objective for which our first Russian asylums were set up? “Considering the course undertaken by us to hold out our young- sters against the pressure of the mischievous ailment, and by sanctifying our asylum by the name of Saint Emmanuel, we would wish, hereby, to express our complete hope that it is but Christian Faith and Love which

No such idea had ever occurred to our forefathers. They inau-

Downloaded At: 07:19 25 November 2010

56 JOURNAL OF RELIGION, DISABILITY & HEALTH

are capable of counteracting the terrible ailment imposing pressure upon these children who suffer from epilepsy and mental disabilities.” Russia was faithful once, indeed, and nobody needed to be told that being feeble-minded means being under God’s protection. This is what we inherited, and this is what we neglected. Taking care of a feeble-minded person was replaced with our holding him/her in contempt. Instead of annulled asylums, we have now, “chil- dren’s special purpose institutions.” The very combination of these words gives one the shivers. As if someone clicks the lock in your ear. Thus, we fire at our children, their lonely crippled childhood You are eight, my son. We went to Moscow where in the Research Institute for Defectology you were tested for your ability to be taught. Hurrah! All your mother’s efforts, not mine–as I, myself, was so preoccu- pied with my expeditions–did you good. You managed perfectly well with pyramids, answered smoothly all the questions of the “medical-ped- agogic commission,” and here we are at last in the consulting room of the master mistress in the subsidiary boarding school. But why boarding school? Considering we are living 70 kilometers away from Leningrad, we will hardly be able to cover this distance every day. The master mistress acquaints us with a boy, a near graduate from the school. The boy has Down syndrome. He is fat, wears spectacles, and looks pompous. He takes a newspaper and reads us its editorial. He does it so fluently! And with such an affectation

MASTER MISTRESS: He can read even Pushkin. Is it true, Kostic?

BOY: Yes, I can.

MASTER MISTRESS: What do you like most in Pushkin?

BOY: “Oneghin.”

(I rejoice, but you, my son, look sad. What’s the reason? Don’t you want to know all “Oneghin” by heart, even better than this guy?)

MASTER MISTRESS: (to my son) If you learn hard, Kirril, you’ll be- come even more clever.

SON: I don’t want.

ME: (to Kostic) Thanks, Kostic! I so much like Pushkin too! So does Kiryusha. He knows well “Tsar Saltan” by heart. Is it so, Kiryusha?

SON: Don’t want.

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

57

ME: Could you tell me, Kostic, why Tatyanna did not marry Oneghin?

(The master mistress stares at me, as if it were my wish to enter the boarding school for intellectually disabled children.)

KOSTIC: But he’s a general! This Gremin. Ge-ne-ral! He’s richer than Oneghin. That’s why she did not marry him.

MASTER MISTRESS: (to Kostic) You’re free

(To my son) It will be difficult for you to have your studies in our school. You’re so dogged. I wonder, whom do you take after?

We went so far.

Yes, is it correct, my son?

SON: Don’t want.

MASTER MISTRESS: I admit you to our school, Kirril, but with a trial period.

A month later, I came to take my son a bit earlier than expected, and peeped into the classroom. My son was sitting at the blackboard, tied by a rope to the desk with his face turned to the wall

ME: He feels uneasy

You’re clear headed.

Do you see? He slept badly

What happened? I asked the teacher.

He’s disturbing.

Whom?

All of us! (She turns over the pages of the class register). Here’s! Read! (sic) He watered under the desk.

Assume you’re tied, what would you do then?

He defecated

What? (The teacher turns over the pages) Here’s under the desk!

Assume you’re tied

The discussion was continued in the consulting-room of the master mistress.

MASTER MISTRESS: (to me) Repeat, please, what you’ve said to Maria Stepanova.

ME: I’d rather you tell me, why my son was tied to the desk. Why was he sitting with his back turned to his classmates?

Downloaded At: 07:19 25 November 2010

58 JOURNAL OF RELIGION, DISABILITY & HEALTH

MASTER MISTRESS: Because all our children in this class are imbe- ciles, and your son is the single “Down.” Do you catch a difference be- tween imbecile and “Down”? If you do not take your son away on your own, we’ll get him through the medical-pedagogic commission and di- agnose him as an idiot! Is it clear to you, father?

ME: I need to take the advice of my wife.

MASTER MISTRESS: Go ahead

(On the next day)

MASTER MISTRESS: What’s your decision?

MY WIFE: Our boy could not defecate under the desk. Since he was two years old

MASTER MISTRESS: (lifts up her skirt) Do you imply that it was me who did it instead?

MY WIFE: (to me) Let’s go away.

Thus you found yourself in the boarding

school, my dear boy. You got into a “parental group”: three to four days in the group, then three days at home, and thus, nearly 10 years passed

away

You learned what was good and bad. You were loved and punished, but all the same–it was life, though not much like the life that used to exist in the St. Emmanuel’s asylum Here are some meditations of the asylum’s superior Angelyna Karlovna Eschgolz: “Each charge, regardless of what stage of intel- lectual disability, or defective degradation of health he is in, keeps the

Those years were most difficult for you, but so very necessary.

Until tomorrow.

And we went away

dignity of his human spirit where something special–the individual, is imbedded. You should never forget that a man has the power to un- cover and cover up his internal life, and our charges maintain this abil- ity too. Only after a multi-year careful keeping watch over a wretch of ours, is one entitled to say, “I know what’s going on within this person

. What were the school disciplines that feeble-minded children were taught at the St. Emmanuel’s asylum? God’s Law, Russian with callig- raphy, arithmetic, history, geography, natural sciences, church singing, drawing.

.

.”

.

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

59

Within three years after inauguration of the asylum, there were al- ready 22 charges, with 13 of them successfully learning in school though they were, as it was put down in the report, “obsessed with in- nate imbecility. These ‘obsessed’ were not only taught, and with notice- able success, but did joinery, sawing, washing, tidied up rooms, and helped their younger mates. The charges with ‘acquired idiotism’ were capable of speaking one or two languages, and made their studies fairly successfully.” What’s the reason? Are our kids sillier than those “obsessed?” Or was the St. Emmanuel’s system something extraordinary? Let’s take another asylum in St. Petersburg–the asylum named after Tsarina Heav- enly–which was founded by Archimandrite Ignasius, and where 15 “id- iots” and “blunt-minded,” 25 “retarded,” and 37 “epileptics” were taken care of. There was a course of studies at the “school department” which was “all but similar to the course in the city’s colleges though, with a longer period of teaching and conducted with use of a special methodol- ogy.” Besides, boys used to master the joinery, shoemaking, bookbind- ing and basket making while girls were taught to knit, and sew. They patched up linen and clothes, did needlework, and managed a house- hold. So many years have passed away since those times. What hindered us, in new Russia, to arrange the same studies? The same life? Why is it only recently that attempts have been undertaken to teach our intellectu- ally disabled children to do something? Only because our physicians stigmatized our people who have mental disabilities as mentally-dis- eased. Nothing more! And then, defectologists divided them into cate- gories or “amenable to teaching” and “unamenable to teaching.” The latter were convicted to be fit only for being supported. This is just “the unamenable” with whom the PNI’s are crowded. The same fate might overtake an “amenable” child if he “misbehaved.” The diagnosis made nowadays by the medical-pedagogic commis- sions are not a subject open to discussion. This is the highest order court. Its sentence is without right of appeal. How many children with intellectual disabilities have become vic- tims of such arbitrary rule? Here’s the opinion of a psychiatrist:

“Oligophrenia in its milder forms is often the consequence not of a dis- ease, but of neglect. If these children had been taken care of and taught, they would have been normal. This is terrible, but this is in the special purpose children’s kindergartens where they are made mentally handi- capped.” The same sort of children you may encounter in subsidiary schools under the guidance of the People’s Education Committees. “For

Downloaded At: 07:19 25 November 2010

60 JOURNAL OF RELIGION, DISABILITY & HEALTH

a child–and this is his basic feature which differentiates him from

adults– his living environment becomes a part of his personality.” This

is

the opinion expressed by a pediatrician. It means that you must check

it

out a hundred times before you send your child to a psycho-neurologi-

cal institution. He won’t come back from there as normal, you may be sure of it. Nowadays, any little chap with his tongue put out will be diagnosed as oligophren by a medical-pedagogic commission. Niels Bohr, by the way, could not hide his tongue until the age of 10. As for Albert Ein-

stein, as a child, he did not speak at all for a long time. If they happened to live in our country, they would have been jailed in our PNI. And, what would you think about the following actions? Youngsters in an or- dinary orphanage rebelled against their chiefs! They all were immedi- ately diagnosed accordingly and moved to a psycho-neurological institution. So, let’s not torture our heads with a question of how many intellectually disabled children are in our country. Let’s better count how many erroneous diagnoses were made. Among all our social diseases, pseudo-humansim is the most ne- glected one. It is merciless towards everybody though children are the most vulnerable sufferers. In this respect, people with intellectual dis- abilities are even “lucky” as they do not comprehend, they have been victims of pseudo-humanism for a lengthy time. How do we dispute the claim that this had been done for their sake? Much has been done, in- deed, but for the sake of what? Yes, they have a roof overhead. But if it leaks, there will not be money or materials to repair it. It may even col- lapse on children’s heads, this roof, as it happened in the Rostov region. It’s only a miracle nobody was killed. In such institutions children are only “shepherded.” They are under

When they mature, by the age of

watch for days, months, years

16-18, they will be moved to PNI’s for adults, where they will stay until their death. In the developed countries, children with mental handicaps are taught dozens of skills at their own discretion. In the USA, a law was passed, this law fines an employer if he refuses to admit a mentally handicapped person to work. It is his/her duty to think over how he/she might employ this person to the benefit of the employer. Employers ac- tually think this over. One benefit of this being that the job occupied by a person who is disabled is not taxed. As for us, we do not allow for any thinking at all for our mentally handicapped, as a rule, they are bound to paste boxes all through their lives. If you want to drive a man to a state of complete degradation–have him paste boxes for his whole life.

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

61

This is what a Moscow scientist, A.R. Maller writes about it: “Deal- ing with ‘amenable to training, capable to move, semi-dependents’ has a variety of organizational forms, and is determined, first, by the entire policy of a state towards such an issue as people’s education, and also, by the general level of economics and culture, and state of health-caring and traditions existing in the country.” Let’s muse over it: our children are “unamenable to teaching” while theirs are “amenable to training,” and “capable to move.” But who can teach a child in a special purpose orphanage if it has only one speech therapist for 250 charges? If there are only 249 charges in an orphanage then what? Will children begin to speak correctly on their own? What teaching might be expected if groups number 15-20 children and typically with only one teacher? Teachers, by the way, are quite a rarity. Where are individual programs? The “do-nothing” syndrome is no less frightening than the Down syndrome. “Do-nothing” will transform anyone into Down. (Editor’s note: “do nothing” will transform anyone into a retarded person.) Not once did TV show us terrible pictures of life in children’s special purpose institutions. Children tell us that they are beaten. It is insanity to lift a hand against a person deprived of any civil rights. But conse- quences are no less terrible if aggression is provoked in a child. This is what the French preacher, Jean Vanier, who created his asy- lums and “arks” for intellectually disabled people in more than 30 coun- tries, says about it. “They are normally not aggressive. But they feel themselves endlessly lonely. A mental trauma is only a beginning of suffering. Fear of punishment, contempt on the part of those who are near them, this makes much deeper emotional scars. These suppressed feelings which pursue a child make life unbearable. In this fear and con- tempt, the original impulse is embedded which generates aggression. And only love is a rescue. Only love penetrates into the under-enlight- ened depth of the child’s consciousness. Children themselves speak to us through their yearning and loneliness. Even when they are not capa- ble of uttering a word. I take a bellowing crooked human being in my hands, press him against my chest and say: ‘You’re beautiful because I love you.’ ” Only we, parents, who have come through all our frustrations, uplifts and downfalls, begin to understand the core of a philosophy that is not to punish our little poor mentally underdeveloped creatures. Only through caress in a smooth tone, can you get from them whatever you want.

Downloaded At: 07:19 25 November 2010

62 JOURNAL OF RELIGION, DISABILITY & HEALTH

This is what Antoine de Saint-Exupery appealed to us from his skies

at his last flight: “One can see only through the heart. For eyes, the most essential is always invisible.” When you, my son, were born, I asked a physician (professor!) what you would look like when you grew up. “Well, do you know what a plant looks like?” He said.

“But nevertheless

“Your son will never distinguish his mother from a nurse.”

.” I insisted.

I wish this professor saw you

as once in a tram you asked an old woman who was sitting nearby, “Does it hurt you?” and then you touched a wart on her chin with your finger. The old woman embraced you and burst into tears, saying, “Oh, good gracious, what’s a woe!” But you kissed her. Straight on her wart. In the settlement where we live, you are a favorite of all old women. They are sitting on the garden benches and looking forward to seeing you. “Hi, grandma Katya! Hi, grandma Lyuba!” In the end, you would kiss them all. You are a God’s man for them, they believe you cure them of their diseases. People in Russia kept faith in God’s men, they would not shy away from them, but strove to call in their houses if there was something wrong. People like you, my son, were always peacemakers in Russia.

Yes, those who are of your age still disregard you. There were no tricks you did not try in an attempt to make friends with them! You threw money for them from the balcony. (“They want to buy vodka. They have no vodka in the army.”) Books were also thrown, (“They will read them. There are no books in the army.”) They, in turn, threw cigarettes

but did not permit me to interfere, “They

into your shorts. You cried

must not be beaten. They are beaten at home,” you said. In the settlement where we live, you present all people with your straws. I take great pains, indeed, to fetch Vietnamese pictures made of colored straws for you. It is your ordinary practice to dismantle pictures

in a twinkling of an eye and then to spread separate straws on the sofa, on the floor, testing each by bending and incessantly shaking them. You call yourself, “straw-addicted.” There is no home in the settle- ment, not a single flat, where you would not take notice of a “Vietnam- ese” picture. You see them through closed doors, through walls. At first, I did not believe it, but one we went to the forest with you. I skied. You trailed me, and all of a sudden–disappeared. An hour later, someone

And he said it about you, my darling

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

63

from a subsidiary enterprise located 12 kilometers away, called me up and told me, “Your boy has torn off a straw picture of ours.” You saw, once, a picture of the Vietnamese straws in a house where a re-fueler from the local petrol station lived. You saw it at a distance of 3 kilometers! You walked all through the village, ignoring all the rest of the houses. You kept on walking as if checking your course by a bear- ing. Having entered the house, where a picture was hanging with a dragon portrayed on it, you took it from the wall and ran away. To ease my quest for you, you left separate straws in the snow, one after another. And so on, until the threshold of your house. What are they for you–these straws? A toy? No, my dear boy. You devised your own way to communicate with people. Nobody but you has such straws. You are asked by people, “What is it? Let me hold it. Or better yet, present it to me.” And you willingly present it to them. Each shopkeeper within our two settlement’s shops has your straws un- der the counter. In the morning, you carry them, not avoiding a single stall, and in the evening you replace them with new ones. You do it daily crankiness? No, it is a craving for communication. An unappeasable craving for communication, a thirst for people, a desire to share your warmth somehow or other–with warmth, you charge each separate straw, thereby transforming it into sort of a talisman of belief, hope, and love. “They are so trustful,” this is what we, as parents, hear so often. We believe these are words of support and consolation. Trustfulness in those who are intellectually disabled is unique by its nature. A boy and a girl, both at the age of about 12-14, made up their minds to use cunning at a competition, they left the ski track, aiming to get home ahead in the race. But they lost their way. They were inmates of an institution for children with intellectual disabilities. They were not found until the next day. In the snow, at a “minus” temperature, wearing only ordinary training costumes, and they were not only alive, but the girl was quite safe and sound, and the boy suffered only from a frost-bit- ten toe. The reporter who told this story in a newspaper had consulta- tions with specialists. This is what they uttered, “The boy is a mild form of imbecile which is why his toe was frost-bitten. As for the girl, she is more severely mentally retarded, so she got away with only a slight fright. It is clear: they did not freeze to death because they were mere animals.” They lay in the snow embracing one another; they kept one another warm, but it was not solely the warmth that heated and saved them.

Downloaded At: 07:19 25 November 2010

64 JOURNAL OF RELIGION, DISABILITY & HEALTH

They were saved by their belief in saving! Belief in people who would, by all means, find them. Even now, I still sense your frost-bitten palm in my hand. I press it gently and feel your gentle hand-shake in return. We, in tandem, would melt up with our warmth and our love a layer of snow one meter thick. I feel myself sometimes so weak–a rheumatic pain here, an ache there, and then I crawl under your blanket and heal myself. “Where are our

kidneys, our livers?” You ask me and stroke, not exactly those areas of my body where these organs are situated. Nevertheless, it helps. Oh, my dear healer

I would like someone to measure the bio-field of intellectually dis-

abled people. In my perception, all of them are geniuses. People do not want to communicate with you because they do not know how to treat you. They do not want to see you because they are afraid of you. They are afraid because they do not understand. Psychol- ogist M. Dubrovskaya was right when she wrote, “Compared with all who are disabled, those who have intellectual disabilities are the most persecuted.” Yes, it is much easier to reject than it is to understand. No wonder our people are indignant: “Why are all insane people not behind

high fences? It’s so sickening even without them. Why are they here at all?” Yes, they are here because not all parents agree to have their chil- dren imprisoned in PNI. “In the Nazi Germany, such children were annulled physically. We annul them morally. This is xenophobia. Here’s what I think about it:

our environment varies all the time, and maybe, the ethos that is forced to defend itself makes some biological exhausts, i.e., it seems to dis- patch its reconnoiters. I would regard these children as “the invalids of war,” (psychologist V. Krisenko).

I do not have, my son, any idea of what a “biological exhaust” means

and what sort of “reconnoiter” you are, but these psychologist’s notes are endearing for me, because in accordance with them, your living in this world has its meaning. Maybe, a time will come when it dawns on people that those like you which are necessary for our community, as an ozone layer which protects us from the sun’s radiation. You are the very ozone layer that shields us against a direct radiation of hatred and evil. In saving you, we save ourselves. But so few people now in the world perceive this clearly. “The fact that their minds are different from ours is not of such great importance as it seems, because there is still a life of feelings and there is still a life of the heart. Other people’s hearts respond to you, but in quite a different way. In its own way, this is a different self-expression.

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

65

Those mothers who do not send their children to psycho-neurological institutions sense the value of their children’s human lives” (M. Dubrovskaya). It was not immediately that your mother and I realized the value of your life. At first, we over-estimated our lives. Now, 20 years later, I can tell any mother, any father: “Do not despair. We live through our second life. The life that is so different, but, at the same time, full of great value. Through your children, the ones regarded as inferior, we come to a fuller understanding of the strength and force of a superior love. You should only hide your children from other people.” Do you remember uncle Max? So kind, so tender, so loving. He be- gan to love you, but no sooner than he understood realistically what you were, he cried. We walked once with him in a forest, keeping silent. All of a sudden he hugged me, burst into tears, then pressed into a tree and cried, “Swear you won’t love him!” Your uncle cried so terribly with such pain, that I said, “No, I won’t!” Please forgive me this terrible lie. I loved, I love, and I’ll love you for all time. It is more and more fre- quently that a thought occurs to me: maybe you, my son, and others like you, are mirrors–mirrors that are poignant to look at. We should be loath to look–so clean are your mirrors. And an eternal spring is in your souls–a challenge to the autumn mire, so rampant in our souls. Souls tormented with worries, envy, and prestige Sympathy with inferiority is on a retreat among our co-citizens. But how do we advise people who, in paying too much attention to the infe- riority of others, reveal themselves as inferior. I insist that being unashamed of one’s own children is of primary im- portance. Do not go out with them only at night. Do stay with people nearby as long as possible. Our children are not God’s punishment for our transgressions. It is not only a delivery trauma or alcohol-addicted parents who are to blame for it. Neither is it their “frustrated” genes that our intellectually disabled children were born with. Those who led us to the Chernobyl di- saster, spread pesticides over our fields in such vast amounts that they penetrate, even now, into mother’s milk–and they, they are not to blame for it?! Our disabled children received Semipalatinsk, Chernobyl, and Aral injections long before they were born into this world. Very soon the St. Petersburg dam will strike children who are soon to be born. No- body knows what viruses will be generated by the dammed Marquise Puddle, and who knows what sorts of imbeciles will thus be created in our city.

Downloaded At: 07:19 25 November 2010

66 JOURNAL OF RELIGION, DISABILITY & HEALTH

A mischief called “inferiority” had been creeping in for some time.

Nowadays, you can no longer hide it as they used to in previous de- cades, when they pealed all ideological bells to persuade us that we were the healthiest nation in the world. The entire world tries now to help our children–Chernobyl’s victims, who while being innately intellectually disabled, face a slow death from our radiation of indifference and contempt. Oh, how I would love to be-

lieve that this eclipse will come at last to an end, and that we will all be- come aware of how tremendous is our woe. Though there is still hope because it is so typical for our people to wake up, only to see great mis- fortune coming closer; it makes our people merciful. All our children who have disabilities are among them too. The likelihood is that they are the most numerous regiment in the million-strong army of people who have disabilities. Limousines are rushing on along the road, on the side of which we are dragging our feet, shoulder to shoulder with our poor creatures. What about getting away from the side of the road and plunging into the road’s rotation? No, it’s frightening. There is a risk of getting under the car’s wheels. But why don’t we take the chance, despite the risk? Here’s a slogan: “Make way for integration!” A blockbuster topic entitled, “All people enjoy equal rights!” This is you, son, whom they are already willing to integrate into our community. And you, Chechnya, we’re willing to integrate all without exception! Look, what a smart car has braked! And what a beautiful lady hails you with her hand. She seems to call me. Let’s run a risk, my son, and have a ride.

A discussion on imbeciles was going on at the big dinner table. The

objects of the discussion–two imbeciles of opposite sex and uncertain age–were sitting at the table also, both on the right of the hostess, though they worked only as servants. The hostess spoke with confi- dence about her ability to deal with such people; this “sort of people” chewed gloomily their chunks of food and showed no reaction whatever to what was spoken about them. They stared far away–over the heads of the guests. Over there, where they are staring, their reservation used to be; they used to live there not so long ago and were no strangers to the rest of the reservation’s inmates. But they had been taken away from the reservation and settled here, at this democratic home, where they are strangers to all. The talk was going on in the same un-hasty manner when the female imbecile choked. The chunk of food that was stuck in her throat began to stifle the poor creature. She groaned and writhed with pain. Her bulging eyes seemed to be ready to jump from their or- bits. “Away with you!” the hostess hissed at her face. She who was

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

67

smiling such a short time ago, seemed to be whitewashed with anger, and hardened under an icy mask. I recall to memory this episode from the film shot by K. Lopushansky, titled, “Museum Visitor,” every time there is talk of social rehabilitation of our intellectually disabled children and youngsters. It seems we are willing to let them into our home this very moment. Not only admitting them as equals, but even as those who are worthy of a special atti- tude–care and mercy. We talk about social rehabilitation in such a confi- dent manner, as if the intellectually disabled people were prepared for this long ago. The community is only looking forward to doing this. But how long, on earth, do they intend to stay at the reservations? Are we, in fact, ready to seat those poor creatures at our common ta- ble and share our last piece of bread with them? “But don’t dare choke! Behave decently, as far as you’re deemed to be people. Look at how we eat, hold spoons, forks, and please, imitate us. Become assimilated and then we’ll see.” What’s our sense of vision, given the fact our intellectually disabled people are deprived of any human rights? Only due to the fact that on December 20, 1971, the former USSR abstained from voting for the Declaration on the Rights of Mentally Handicapped People (resolution No. 2850 of the XXVI session of the UN Assembly General). In accor- dance with this resolution, an intellectually disabled person has all the rights enjoyed by “normal” people, including rights to proper health care, education, recovery of ability to work, and, in addition, a patron- age which allows one to develop one’s abilities. I believe this is just the provision of rights, for both normal and intellectually disabled people, that impeded our delegation to participate in voting. What’s the main cost of our long-term abstention, which is so ruinous due to its immoral main point? It made legal the cruelest genocide to- wards people with intellectual disabilities–the genocide that now reigns in our country, towards children and youngsters especially. What is it but genocide when a man is not socially protected due to the mere fact that he is born with an intellectual disability? What is it but genocide when the confinement of children in communities of others like them is so pursued by the state that it has become habitual in our country? The absence of teaching any skill, and refusal to admit to work, are non-pun- ishable practices. At the same time, we lament: “Rehabilitation, adapta- tion, socialization.” Yes, we need it all. We need it so deeply, but you should understand explicitly that rehabilitation is a recovery of what was once, but is now lost; it is a disclosing of potentials and capabili- ties–a discontinuous and extremely complex process into which an in-

Downloaded At: 07:19 25 November 2010

68 JOURNAL OF RELIGION, DISABILITY & HEALTH

tellectually disabled man is involved from birth to death. This is not an imitation of life, this is a life itself! But we do not care a straw. We need only to sing in unison with the up-to-date terminology. Let’s for in- stance, not use the expression, “mentally retarded.” Let’s call them “in- tellectually disabled.” But who disabled them? There is no answer to this. Yes, we need social adaptation. But what do we do? We want to get intellectually disabled people adapted to the modern scenery of life–but that is all. For the sake of what, do we break this man, so unlike us? Why shouldn’t he live in a world of his own? Ah, to live with dignity! As a real human being! Let it be a special world of senses and deliberation. Whom do we shove with such “acceleration” into our crazy hostel: those who are ca- pable of learning, but remain illiterate? Which persons were capable of living among others, but instead were thrown away into the abyss of physical and spiritual degradation? It is suggested that all these things be forgotten to allow for head-on adaptation. We should never forget that regardless of where a child who has an intellectual disability lives, he is in a confinement–whether at home or in a special purpose institu- tion. With whatever parent’s warmth impregnates the walls of his home, it is nevertheless a sort of hothouse or isolation ward for him. For a number of years, a child is in a vacuum of his habitual environment. He knows all of his surroundings, in his loving home, but he knows nothing beyond its walls. He sees another life through the windows of his home. But he only sees it–nothing more. He does not live the life outside. The child’s consciousness, unlighted because of his illness, re- quires his contacts with normal children. But these normal children would not enter a strange home on their own–a home where a child, so unlike them, lives. Their parents do not feel inclined to bring them there either, for they fear something may go wrong. Though, there are exceptions: a new boy, for example, who used to run away from school to linger with his intellectually disabled friend. For hours, he would read books to his friend, even teach him and draw with him. Most importantly, he took interest in dealing with dumb Egorka. It was more fascinating for him than to stay in school. Why? Was he lonely? Did he need to be a leader? I guess this is real compas- sion. Or perhaps, could it be a need to recover justice? “I can do all–he can do nothing. It should not be so. Must not be so.” Is it not rehabilita- tion? And who is the rehabilitator: the inmate of an ailing child? A

friend

Then why do we not allow our children to be compassionate in this way? Hasn’t the time come to ponder over the possibility that we may

.?

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

69

break something in our children if we continue to hinder their contacts with their intellectually disabled inmates? Egorka went with his teacher-friend to his dacha and the people next-door began to forbid their kids from coming close to the “fool.” Then, these guys had a little battle with their mothers! This is normal:

children’s solidarity does not yield to either threat or caress. Let it tri-

umph!

Let’s talk less about cruelty of our children. It is we, ourselves, who

make them cruel. What is clear is that through contacts with normal

children at home, a child with an intellectual disability would be better prepared for social rehabilitation. Now, let’s look at the situation in a rehabilitation institution. Yes, there are special rooms and cozy nooks where a child perceives his sur- roundings. Here’s a loaf made of wood, or an apple made of paraffin on

a plate, a box on the wall–this is a mailbox. You may sit down and write

a letter to your mother. Oh, you cannot write? Drop the envelope. It’s

within your capabilities to paste envelopes together. I could never understand why it was not possible to have a real mail- box in a boarding school for intellectually disabled children. Or why it was not possible to have a real shop to “sell” things for real money. Is it beyond an elder child’s capability to carry plates with porridge whereby imitating waiters? Why it is not admissible to have real designations on the dial to teach a child to ring up his mother? Seven letters and seven figures–he will, by all means, engrave them in his mind because he will hear the voice of his own dear mother. “Faked rehabilitation” is a “lunatic asylum” game. If it is a step for- ward in the direction of social rehabilitation, preclude its being to the prejudice of our children. The thinking of an intellectually disabled child is highly conservative. If he is accustomed to a wooden loaf since his infancy, then he will, whenever he does the shopping, look for stale bread. The money should be the same as they used in the boarding school–i.e., cut paper. It is even more difficult to change over from an invented or “faked” world to the actual one. An ingenuous compassion for a mentally deprived man should be laid down as the basis for the social rehabilitation. So much so that it concerns a child. Is our community ready for this? No. For so many years, compassion has been knocked out of us! The ones at the helm of power worked tooth and nail to eliminate objects of compassion and mercy. It was the explicitly articulated official ideology since it is much more difficult to transform a merciful man into a fanatic. It is also much easier to govern the immoral community. We are not ready to save our

Downloaded At: 07:19 25 November 2010

70 JOURNAL OF RELIGION, DISABILITY & HEALTH

intellectually disabled people because we ourselves need to be socially rehabilitated at first, prior to voicing measures to rehabilitate our intel- lectually disabled co-citizens. It is high time we apologized to them. Why are there already over 100,000 sympathizers with the 140,000 families who have intellectually disabled children in Germany? What is it? Is it a guilt complex from the annihilation of such people, or is it the dawning awareness that it cannot be otherwise? Both, I guess. People understand that we need to co-exist somehow or other. The process of this awareness awakening is struggling up all around the world, though you will encounter no such rigid insulation of the intellectually disabled people from the community as in our country. This is not because there are so many intellectually disabled people on the streets of western countries, as the birth statistics declare; there are 6 intellectually disabled persons to every 1,000, while if we believe our statistics–there are only 4 such persons for the same 1,000 in Russia. It has become a practice in the West to admit integration as the only feasi- ble and expedient way of co-existence. Though this integration has al- ready a multi-year history. It has all been done owing to titanic efforts exerted by the Federal government in the field of rendering assistance to intellectually disabled people in Germany. Integration must go on in terms of getting intellectually disabled and normal people adapted to one another. A sample of a community where defective people are interpreted as unlike us–nothing more, should be introduced into people’s minds. Give your helping hand if you like to do it. If it does not please you, pass by but at least do not put any blame on them. Do not outrage either in words or in deeds. He is so vulnerable, this man who is so different from us. He feels he is attracted to you, be- ing at the same time ignorant of “why I am this kind?” Because he real- izes you are not of the same kind. He has tried to live among his peers. But do not push him away. If you hurt a wretched man you hurt God. With no proper attention, ingenuous care, mercy, and compassion, a so- cial rehabilitation, to say nothing of integration, is unfeasible. Separa- tion is inevitable. Any attempt to proceed with such a far-fetched integration, a forced co-existence will prove to scare away even more than ordinary practices of indifference, contempt, and even hatred. We should sort out calmly the moral, social, and economic aspects of this likely co-existence so as not to make other follies with ramifications that may hurt the same poor creatures. Nowadays, we seem to have qui- eted down, we live only in the present and try not to think of where we are going. However sad it may sound, we all prove to be inferior. We are all intellectually disabled, as we admitted not a mere outrage upon our-

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

71

selves, but a devaluation of our personality. We allowed ourselves to be made fools when we began to believe our leaders who told us our nation was the healthiest one. This is the decaying capitalism that gives birth to inferior people. It will never happen to ours because it must not happen. Despite all these declarations, they were born. They were born not by the plaster girls with oars, and boys throwing discus standing firmly on pedestals. Intellectually-disabled children were born even to members of the Politburo, not to mention members of grassroots organizations. But all these children were invisible beings. Today, we do not conceal that there are over 1 million disabled chil- dren in our country, though our ringing the bells of rehabilitation and social protection measures are similar to our former declarations about our being the healthiest nation in the world! Nobody worries that all the standard acts that are valid at present are intended only to assess a de- gree of inferiority and a magnitude of the adequate funding. Nobody cares besides parents, but our voice is still weak, and our fear of those in power is still strong. How do we instill that infancy disablement is not an abstraction, but a certain child or youngster afflicted with an ailment with all the peculiar- ities of the ailment, verification tests and specialist’s observations which must be laid down as the basis for the rehabilitation system. The goal of rehabilitation is not to assess a disablement, but to reveal poten- tial capabilities of intellectually disabled people and to provide them with the quickest possible rehabilitation system that would enable them so that they were no longer a burden. Let it be, even to some extent, for the whole community, not its outcasts. The motto of a sophisticated state policy, relative to its intellectually disabled co-citizens should be: “Given we cannot provide them with other full-fledged health, we will give them other full-fledged life.” When will it happen? I do not know but I would prefer to be optimistic. I would rather believe that PNI’s will not be permanent hurdles on the road of life for our intellectually disabled children. It will become a re- ality that an aphorism by Fasil Iskander will be inscribed on PNI’s pedi- ments: “A Soviet person who is mentally diseased is the most normal one in the world.” There will be small-scale asylums as well. How do we deal with all these huge PNI’s? Let’s think it over. You can trans- form them into factories, warehouses, or put them up for sale and then, with all the gains acquired you may put all the kindergartens and day nurseries which are in wretched condition now, in order. You could lodge Houses of Care there. It is high time we got accustomed to this re- markable word–CARE. To take tender care, to caress, to fondle are

Downloaded At: 07:19 25 November 2010

72 JOURNAL OF RELIGION, DISABILITY & HEALTH

beautiful words. Let those words enter our life, and our relations with intellectually disabled people. Let’s peer into this without irritation and contempt. Let’s get ourselves accustomed to this. They are not wander- ers walking along the sides of the roads, nor are they old men with psal- tery and with a guide in rags. No, it is our mothers who have become jobless at the age of 30 due not only to the fact that there are no jobs available at present. They do not know what to do with their children. The children who grew up vis-à-vis torments of their own mother’s ev- eryday sufferings, to the last gasp of their physical and spiritual capabil- ities. Hearty gratitude to you, my sisters. Hearty gratitude to you, my brothers. You are remarkable fathers, and I know what you muse over in your hour of need. But you did not fall asleep, my son. You pressed yourself so closely that I am afraid my heart will break down, because of my love for you. Take me with you to the “conference.” What will you do at the conference? I’ll drink coffee. My son has a habit: when I shave him, he stares at me so keenly. What do you see, my dear boy? What do you want me to say? You are perfect Friday and I would like to be your Robinson for good. For you, every inland is inhabited if your mother and father are nearby. Yes, we can be disembarked on any uninhabited island and your presence will make up for all the shortages. With you being, nearby, we never feel lonely. There was something peculiar about you, something special through which you brought the arms of both of us and brought to the al- tar in front of which no one would ever lie–neither to God, nor to you. Our only entreaty to the Lord is: “Please keep us together as long as pos- sible. Do not separate us.” You are welcome to God, my son. Welcome to me and your mother as well. We are happy we have you. So, we three live together: face-to-face with a peculiar happiness

AUTHOR NOTE

Boris Zalmanovich Krivoshei was born in Leningrad in 1933. He is hydrologic en- gineer, writer and journalist. After the graduation from Leningrad’s Hydro-Meteoro- logical Institute he worked as a chief of hydrologic expeditions in Middle Russia, Siberia and Kazakhstan. Boris Krivoshei has two children: a daughter Julia and a son Kirill. Kirill has Down syndrome. In 1994 Boris Krivoshei founded first non-govern- mental parent’s association in St. Petersburg–“League of Life Assistance to Intellec- tually Handicapped People.” At the present moment he is a Member of Presidium and a Press-Manager of the St. Petersburg Association of the Societies of Parents with Hand-

Downloaded At: 07:19 25 November 2010

Boris Krivoshei

73

icapped Children. Boris Krivoshei has carried out three international projects: “Assis- tance to Intellectually Handicapped People and their Families in St. Petersburg” (Russian-German project, financed by European Community), “Promoting the Inde- pendent Living, Integration and Employment of Young Persons with Developmental Disabilities in St. Petersburg” (Russian-Finnish project, supported by Finnish Ministry of Foreign Affairs), “Support to parents associations in raising quality of life of young intellectually handicapped persons” (Russian-Finnish project, financed by European Community). Boris Krivoshei’s plays have been presented in theaters in Moscow, Si- beria, Far East and Ukraine. He also wrote a number of articles in press concerning problems of protection of rights of intellectually disabled persons.

also wrote a number of articles in press concerning problems of protection of rights of intellectually