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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
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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 fromThe 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
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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 themand are willing to meet
their aspirations halfway. Yes, they can also be aggressive if you drive
them to a state of aggressivenessif 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 howthey 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
threwhimout 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 PNIs.
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 helmof power,
54 JOURNAL OF RELIGION, DISABILITY & HEALTH
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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 someones
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. Emmanuels 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 . . . No such idea had ever occurred to our forefathers. They inau-
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
Boris Krivoshei 55
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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 Gods 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-
drens 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 Moscowwhere in the Research
Institute for Defectology you were tested for your ability to be taught.
Hurrah! All your mothers efforts, not mineas I, myself, was so preoccu-
pied with my expeditionsdid 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 roomof 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 fromthe
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. Whats the reason? Dont you
want to know all Oneghin by heart, even better than this guy?)
MASTER MISTRESS: (to my son) If you learn hard, Kirril, youll be-
come even more clever.
SON: I dont 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: Dont want.
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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 hes a general! This Gremin. Ge-ne-ral! Hes richer than
Oneghin. Thats why she did not marry him.
MASTERMISTRESS: (to Kostic) Youre free . . . Youre clear headed.
(To my son) It will be difficult for you to have your studies in our
school. Youre so dogged. I wonder, whom do you take after?
ME: He feels uneasy . . . Do you see? He slept badly . . . We went so far.
Yes, is it correct, my son?
SON: Dont want.
MASTERMISTRESS: 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 . . .
What happened? I asked the teacher.
Hes disturbing.
Whom?
All of us! (She turns over the pages of the class register). Heres!
Read! (sic) He watered under the desk.
Assume youre tied, what would you do then?
What? (The teacher turns over the pages) Heres . . . He defecated
under the desk!
Assume youre tied . . .
The discussion was continued in the consulting-room of the master
mistress.
MASTER MISTRESS: (to me) Repeat, please, what youve said to
Maria Stepanova.
ME: Id rather you tell me, why my son was tied to the desk. Why was
he sitting with his back turned to his classmates?
Boris Krivoshei 57
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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, well 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 . . . Until tomorrow.
(On the next day)
MASTER MISTRESS: Whats 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) Lets go away.
And we went 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 . . . Those years were most difficult for you, but so very necessary.
You learned what was good and bad. You were loved and punished, but
all the sameit was life, though not much like the life that used to exist
in the St. Emmanuels asylum . . .
Here are some meditations of the asylums superior Angelyna
Karlovna Eschgolz: Each charge, regardless of what stage of intel-
lectual disability, or defective degradation of health he is in, keeps the
dignity of his human spirit where something specialthe 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 whats going on within this person
. . . .
What were the school disciplines that feeble-minded children were
taught at the St. Emmanuels asylum? Gods Law, Russian with callig-
raphy, arithmetic, history, geography, natural sciences, church singing,
drawing.
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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.
Whats the reason? Are our kids sillier than those obsessed? Or
was the St. Emmanuels system something extraordinary? Lets take
another asylumin St. Petersburgthe asylumnamed after Tsarina Heav-
enlywhich 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 citys 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 PNIs 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? Heres 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 childrens kindergartens where they are made mentally handi-
capped. The same sort of children you may encounter in subsidiary
schools under the guidance of the Peoples Education Committees. For
Boris Krivoshei 59
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a childand 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 wont 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, lets not torture our heads with a question of how many
intellectually disabled children are in our country. Lets 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. Howdo 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 childrens heads, this roof, as it happened in the Rostov region.
Its only a miracle nobody was killed.
In such institutions children are only shepherded. They are under
watch for days, months, years . . . When they mature, by the age of
16-18, they will be moved to PNIs 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 degradationhave him paste boxes for his whole life.
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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 peoples education, and also,
by the general level of economics and culture, and state of health-caring
and traditions existing in the country.
Lets 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. (Editors
note: do nothing will transform anyone into a retarded person.)
Not once did TVshowus terrible pictures of life in childrens 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 childs 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: Youre 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.
Boris Krivoshei 61
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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 . . . I insisted.
Your son will never distinguish his mother from a nurse.
And he said it about you, my darling . . . I wish this professor sawyou
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, whats 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 themall. You are a Gods man for them, they believe you cure them
of their diseases.
People in Russia kept faith in Gods 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
into your shorts. You cried . . . but did not permit me to interfere, They
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 themthrough 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 suddendisappeared. An hour later, someone
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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 fromthe local petrol station lived. You sawit 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 youthese 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 settlements 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 themwith newones. 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 otherwith 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 froma 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.
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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 weaka 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? Its 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. Heres 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 psychologists 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 fromthe suns 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 peoples hearts respond to you, but in
quite a different way. In its own way, this is a different self-expression.
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Those mothers who do not send their children to psycho-neurological
institutions sense the value of their childrens 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 wont love him! Your uncle cried so terribly with such
pain, that I said, No, I wont! Please forgive me this terrible lie. I
loved, I love, and Ill 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 mirrorsmirrors that are poignant to look at. We should be
loath to lookso clean are your mirrors. And an eternal spring is in your
soulsa 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 ones 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 Gods 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 mothers milkand 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.
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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 nowto help our childrenChernobyls victims,
who while being innately intellectually disabled, face a slowdeath from
our radiation of indifference and contempt. Oh, howI 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 fromthe side of the road and plunging into the
roads rotation? No, its frightening. There is a risk of getting under the
cars wheels. But why dont we take the chance, despite the risk? Heres
a slogan: Make way for integration! Ablockbuster topic entitled, All
people enjoy equal rights! This is you, son, whom they are already
willing to integrate into our community. And you, Chechnya, were
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. Lets 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 discussiontwo imbeciles of opposite sex and uncertain
agewere 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 awayover 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 reservations inmates. But they had been taken away fromthe
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
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smiling such a short time ago, seemed to be whitewashed with anger,
and hardened under an icy mask.
I recall to memory this episode fromthe filmshot 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-
tudecare 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 dont dare choke!
Behave decently, as far as youre deemed to be people. Look at how we
eat, hold spoons, forks, and please, imitate us. Become assimilated and
then well see.
Whats 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 ones 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.
Whats the main cost of our long-termabstention, which is so ruinous
due to its immoral main point? It made legal the cruelest genocide to-
wards people with intellectual disabilitiesthe genocide that nowreigns
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-
tiesa discontinuous and extremely complex process into which an in-
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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. Lets for in-
stance, not use the expression, mentally retarded. Lets 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 lifebut
that is all. For the sake of what, do we break this man, so unlike us? Why
shouldnt 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 confinementwhether at home or in a special purpose institu-
tion. With whatever parents 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 itnothing more. He does not live the life
outside. The childs 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 owna home where a child, so
unlike them, lives. Their parents do not feel inclined to bring themthere
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 allhe
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? Hasnt the time come to ponder over the possibility that we may
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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:
childrens solidarity does not yield to either threat or caress. Let it tri-
umph!
Lets 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, lets look at the situation in a rehabilitation institution. Yes,
there are special rooms and cozy nooks where a child perceives his sur-
roundings. Heres a loaf made of wood, or an apple made of paraffin on
a plate, a box on the wallthis is a mailbox. You may sit down and write
a letter to your mother. Oh, you cannot write? Drop the envelope. Its
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 childs 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
figureshe 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
schooli.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
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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 fromthe 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
statisticsthere 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. Asample of a community where
defective people are interpreted as unlike usnothing more, should be
introduced into peoples 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-
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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 capitalismthat 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.
Howdo 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 specialists 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 knowbut I would prefer to be optimistic. I
would rather believe that PNIs will not be permanent hurdles on the
road of life for our intellectually disabled children. It will become a re-
ality that an aphorismby Fasil Iskander will be inscribed on PNIs 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 PNIs? Lets 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 wordCARE. To take tender care, to caress, to fondle are
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beautiful words. Let those words enter our life, and our relations with
intellectually disabled people. Lets peer into this without irritation and
contempt. Lets 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--vis torments of their own mothers 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 knowwhat you muse over in
your hour of need.
But you did not fall asleep, my son. You pressed yourself so closely
that I amafraid 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?
Ill 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 lieneither 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 Leningrads 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 parents association in St. PetersburgLeague of Life Assistance to Intellec-
tually Handicapped People. At the present moment he is a Member of Presidiumand a
Press-Manager of the St. Petersburg Association of the Societies of Parents with Hand-
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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 Krivosheis 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.
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