“ . . . Only it is impossible to slip away for good into dreams,

A brief moment for fun. How much pain all around . . . ”

Vladimir Vysotsky

I had never before visited the Chernigovsky home for children with developmental disabilities [at rural Kalinovka near Melitopol in Southern Ukraine. Before the revolution, the Kalinovka internat was the Mennonite estate Steinbach.] I found out about it from having read the first report of Albert Pavlov that had been done already in March. From that moment the word “Kalinovka” was imprinted on my brain in bright red letters. And what still sticks in my mind are the eyes of Little Alyosha, a boy lacking complete arms and legs. Pity—that is not the word with which to describe my feelings, [rather] it is a feeling of despair and an ache that you feel in every cell of your body.

Alyosha

It happened thus: in Kiev I joined Mariana Voronovich, who for the past six years has been the coordinator of the project for aid to abandoned children. One night on the train later found us in the train station at Zaporozhye.

After meeting up with Albert Pavlov, volunteer head of the Zaporozhye charity “Happy Child”, we first headed for the charitable organization “Patriots of Zaporozhye” for a meeting with the executive director of the fund, Tamara Nikolaievna Ogorodova. Zaporozhye volunteer Sveta Krylova arranged this meeting. Cheered by the friendly conversation and with promises of help, we then went over to the oblast agency of Labor and Social Protection. [The head of the agency] Viktor Pavlovich Pankratov received us warmly and cordially. He assured us of the support of the local authorities and [promised] to support our initiatives as well as to allocate salaries for four additional personnel at the Kalinovka children’s home.

The head of the Agency for Labor and Social Protection for Zaporozhye Oblast, Viktor Pankratov

The following morning, 3 November, a volunteer group consisting of seven persons—Volodya, who was behind the wheel, Albert Pavlov, Svetlana Krylov, Mariana Voronovich, Anna Gerashchenko, and two teacher-rehabilitation specialists from ZIGMY, Tatiana and Sasha, set out on the remaining leg of the trip where even “Marshrutka” taxis do not go. Miraculously tucked into Volodya’s car, we [all seven] finally reached Kalinovka. [The route to isolated, rural Kalinovka passes down P38 from Tokmak to Panfilovka and then turns east on an excruciatingly potholed lane for a few kilometers. The trip from Zaporozhye by car would last about three hours.]

“Unloading” [All seven passengers pile out of the car at Kalinovka.]

It was a Saturday morning and the director of the internat Nikolai Viktorovich Slavov met us at the entrance of his institution. The atmosphere of our meeting was relaxed and friendly. The formalities out of the way, we asked for permission to examine the buildings where the children are located, for the purpose of discerning the actual state of affairs and to determine if enough room exists to set up playrooms and a rehabilitation area.

We climb to the second floor where the ward for the bedridden children is situated. Straight ahead, facing the stairway, is located a large room where we are met by “crawlers” [children unable to walk] dressed in new, knitted, pink blouses. On the floor [are] toys brought by the volunteers on the last visit. Mariana crouches down and greets the first little one. It is as if a wave passed around the entire room, little pink lumps, on all fours, as they are able, or sitting [and pushing] with the help of hands, rush toward us. A forest of hands goes up and children’s heads stretch toward us with all their might. Mariana reaches for her camera, and before anything else, out crawls Alyoshka, pushing aside the others with his undeveloped arms, indignant. Feisty by temperament, he restrains his buddy, pressing against him, and he does not give anyone else a [chance to pose] for the camera. After the first snapshot , he gives every indication that he still wants to be photographed. And when we leave, he begins to cry. It falls to Albert to stay behind and entertain the little fellow with his camera. We go on to the rooms where the bedridden children lay. The majority are lying on new sheets with a cheerful design. A revolving toy is placed above only one bed. On the remaining beds, nothing, since according to the personnel, the children just throw them out.

Albert reported later that he approached one child and, looking at the nameplate to see what his name was, said, “Hello.” The little boy only slightly turned his head and suddenly a light went on in his eyes. He recognized the man who had been there at the beginning of September! And casually, but clearly all the same, he said, “Oh, hi!”

We pass through the “blessed” half of the floor and go into the second [part]. In here are lying the “painful” [profoundly disabled] children. Here on a bed a young man lies, above whose mouth flies circle. The staff tells us that they brought him here already a month ago, predicting a quick death. But he is still living. Hidden under covers, the children, practically speaking, in no way give themselves away, except for a furtive glance. But stop to lift slightly the covers and sheets over the skin and their little skeletons become apparent. The haunting 10% ! [The rate of mortality at Kalinovka is said to be 10% per year. That would total about sixteen deaths annually from among some 160 children].

These are the ones, for whom it is better to die. After all they place a burdensome yoke on the necks of the healthy, beautiful, and hardworking members of our society. One more observation: a fairly large number of children with Down syndrome, five to six years of age, are lying here in beds and their faces often show slack muscle tone. In fact, to confine children with Down syndrome to beds would arouse surprise among the luminaries of world medicine. Perhaps they have overlooked a certain special “internat” variant of Down syndrome!

The next stage [of our visit] is to be an inspection of the newly rebuilt building for the girls. A pretty, colorful hallway leads to a leisure room. There sitting on a sofa and small benches are forty girls of various ages. A TV plays in the room; there are no other diversions or entertainments. The older girls greet us amicably and respond to questions. They show us the kitchen where the washing machine is standing and tell us that the somewhat older girls do their wash there and also help with the care of the younger children. Two sleeping rooms, each with twenty beds, appear colorful and clean. But taking all this into account, I cannot get rid of the feeling of imprisonment, even with the newly installed Euro-windows. Try spending an entire cold fall and winter in a room with forty different companions with disabilities in the presence of two aides. Wouldn’t many of us go mad confined for these months within four remodeled walls?

“Remodel practically finished.” Photo of the former Jacob Dick residence that now houses girls

Three photos of girls four to thirty-five with shaved heads in the newly fixed up rooms; one photo of tables and beds

To get to the building where the boys live, we head for the car. The building is located at a rather far distance from the administration and the “maidens” facilities. It is an unremodeled building. [There are several buildings in this cluster all belonging to the former Peter Schmidt residence. They are located 360 meters from the girls’ dwellings.] At first they show us the room where the older boys live who help on the farm. For the guys in the room there stands a TV with VCR. The room itself gives off a sort of “half-domestic” aura, and I think that for certain boys, to live and work at Kalinovka is the optimal option, if one considers that upon reaching age 18 they [would otherwise] leave “under guard” for a psychoneurological sanitarium. [This is reported to be the men’s facility for mentally ill, cognitively impaired, and physically disabled men at Ohrloff, also located in rural Molochna.]

After the inspection we drop in on a similar boys’ “leisure room.” Sitting on benches in two rows are boys rocking back and forth; there is also a talking TV—all of which two attendants are observing. One fellow, seeing us, begins to twist on the window sill. Later, when Mariana told about needlework activities, she more than once stressed the fact that such activities, even though of short duration, help both attendants and patients more easily to cope with such a problematic control situation.

“In the unit for older boys they are already waiting for us.” Image of a young man looking out the window. He has no front teeth. The second photo shows six older boys around a table.

Across the yard we head for still one more building where fixing up was done with the efforts of the personnel. On the way [we have a] conversation with the woman working there: she remembers the time when the former director [Raisa Alekceevna Kalaida] wielded absolute power there. She told how the entire staff rebelled against her. She related how the children went hungry and ate green squash in the fields.

We enter the quarters for the older “crawlers.” It is such an awful expression in this day and age when even in our country wheelchairs are available free of charge from appropriate service organizations. Here, on the other hand, both little and grown up children are only able to move about by crawling on the ground.

How easy it is, hearing the diagnosis “moron” or “idiot of such and such a degree” for a shadow to spread over children like this. It is to declare them waste products, unavoidable in any society; garbage that it is necessary to take as far away as possible from human eyes to a dump. But here you lean over a little one and in answer to a greeting you see a smile and hear, “Hello.”

--And what is your name?

--Kolya.

Someone hurries to show you a block and in so doing says,

--It’s a block.

--And what color is the block?

--Red.

A third stretches out his hand to you for a greeting; you respond, and he does not hasten to let go, prolonging the handshake. You have to let go, you say, “wait,” “let go,” [let me?] greet another. The little boy smiles, lets go my hand and . . . extends the other.

How different these children are—some sitting quietly in the corner of the room, others actively fighting for your attention and kindness. Some—continuously rocking from side to side, others frozen motionless in one pose. [This description suggests autism.] Nevertheless, with all of this, you do not lose the feeling that these are children. These, just like your own kids, [often] difficult, beloved, requiring attention twenty-four hours a day, it seems, to the end of your days.

Why indeed is there for one a mama and for another a lifetime sentence? Without the right of a way out to freedom? The sentence of a group of common prisoners—and for what crime? For the reason that he is not born like everyone else, and uncle and aunt’s goodwill is not strong enough to endure [his] appearance? I yearn to write about Western perspectives or approaches toward the disabled segment of the population: about electric carts for persons with special needs, noiselessly scurrying about outside, calmly driving to supermarkets, restaurants, and theaters. About worthy volunteers who transport old men and persons with special needs around outdoors to parks and art galleries. About a teenager in a wheelchair who plays volleyball in a group of normal teenagers. About normal families that raise both normal children and children with Down syndrome without doing any damage to their sense of worth or dignity. And much more, precisely because the day before the article about Kalinovka, I was at the zoo with my own children where more than one or two families with a child with Downs caught my eye. The very thought that the fate of such children depends on how many kilometers west or east they are born angers me exceedingly.

Moreover, allow me to remind the knowledgeable cynic of the fact that only one generation after Hitler executed and cremated a large number of mentally impaired people, their percentage [in the population] reached the same magnitude as in the prewar years. There were, are, and always will be humans with special needs.

Along the same lines, we—Elevated Race of Healthy Persons with physically perfect bodies, high functioning intellect, and self-righteous attitude—but growing old all the same over a hundred years—we too will be in need of elementary human compassion. How many of us will have the resolve not to become a burden to society?

These thoughts aside, we return to the office of the director where Mariana shows the photographs, made in triplicate, of the wards of [other] internats. All this is only to prove to the administration that miracles do not happen. That they were able to reconfigure similar internats in which conditions were even worse (indeed, it was also necessary to begin remodeling there), into rehabilitation centers. Where at present they love to bring different bureaucrats from the capital, analogs, one might think, to those from the oblasts—not! Well, to hell with them, the bigwigs! The main thing is that the children in the internats are living as children, living out a well-deserved childhood. And their smiling little faces are far and away the best proof for that. Mariana Voronovich works as a telejournalist for the channel 1 + 1 and for a period of six years has also been coordinator of a project for establishing rehabilitation centers in internats for children with developmental disabilities. Her experience of work with these internats in the Ivano-Frankivsk (Zaluche), Kirovograd (Znamenka), and Zhitomir (Pugachev) Oblasts proves that nothing under the sun is impossible. Here is only a short list of projects that she is developing that are specially funded by foreign sponsors and under direct participation of foreign volunteers.

1. The equipping of rooms for physical rehabilitation; increasing the qualifications and motivation of the personnel by sending them to training and seminars in Kiev and Lvov (“Dzherelo”); foreign volunteers working at internats; training of the personnel in the skills of work with the children on location. [The Dzherelo Children’s Rehabilitation Centre in Lviv (Lvov, Lemberg) specializes in the treatment of children with cerebral palsy, autism, and other cognitive and neurophysiologic disabilities. [See http://www.dzherelocentre.org.ua. ]

2. Working with the teachers/therapists of the children’s homes to train them in the skills for dealing with children with particular types of disabilities; sending teachers to seminars. The teachers are provided above all with instructional games and materials. Funding some of the attendants and teachers (such as those who teach music) from donor sources.

3. Organizing three workshops for older children, where suitable, for embroidery, crocheting, bead weaving, and the manufacture of decorative candles. Teachers also would undergo special training at the Dzherelo Center (Kiev). In addition, an exhibition of children’s work will take place someday soon at the Ministry for Labor and Social Protection.

4. Establishing two playgrounds, one for the younger group [middle-school age]—play complex, pavilion, and swings for the bedridden children according to a plan; and a playground for the older children—ping-pong table, basketball hoop, a pair of horizontal bars, and an attractive summer house for recreational gatherings.

5. Starting a project in September for training and development of non-mobile children. For this project committed donors provide a year’s salary for three teacher-therapists exclusively to study these kinds of [disabled] children.

6. Beginning a project (in November) to create an “Occupational Therapy Lab.” In stage one they teach the children to prepare food independently, in stage two, to buy groceries at a local store (until they understand what money, produce, packing materials, and so forth, are). Parallel to that, they will teach little younger children to iron, do laundry, sew on buttons, and more—to lead themselves out of difficult and unpredictable situations.

7. Next year planning calls for emphasis on the health of the children—to examine and refer several individuals for surgery to correct orthopedic problems and to refer the most serious to Truskavets [a private clinic specialized for cerebral palsy located in the Carpathian Mountains in the Lviv region.]

Below you may find several photos made at internats operating under the auspices of volunteers and international foundations. [Note: these are not Kalinovka photos.]

“We plan to install a similar dry pool [of plastic balls] at Kalinovka. Cost—around 600 Euros.”

“American and Ukrainian volunteers walking with children [in wheelchairs]”

“On an outing. Children of an internat of the fourth type—quite typical children”

“Art therapy”

During the past two years volunteers have been focusing first of all on physical rehabilitation, programs of training, and social adaptation for children, and enhancing the qualifications and motivation of the workers at children’s homes. These are the most pressing needs in children’s homes of this type after everyday [necessities]. [Other goals:] attract other donors/sponsors; disseminate information (soon a website will be ready where all information about the activities of the volunteers at the internats for disabled children will be placed); exchange experiences with other leading groups; link with NGOs and rehab centers.

There remins one problem that we learned about from M. Voronovich and that we saw for ourselves at Kalinovka. It is a problem that up to now the bureaucrats of the Ministry of Public Health and the Ministry of Labor and Social Protection did not want to acknowledge: around 10% of the children at all internats of this type have hypotrophy of Article 3 and dystrophy caused by lack of nourishment. This problem is not for lack [of food] but because one aide only must serve fifteen persons, [a ratio] fixed for our state by legislative order. In the same amount of time that one mother feeds her own healthy child, one aide must attend to fifteen sick children whose disabilities do not permit them to eat and digest food readily.

From the standpoint of the survival of the fittest, the point of view of the bureaucrats, it seems altogether appropriate that [just] the healthy and strong survive. But I saw with my own eyes photographs of children lying in beds for six to eight years who, after correctly organized feeding over half a year, become able at first to sit, then to begin to move with the aid of special devices, and several even to walk independently. The photos prove that it does not take miracles. This particular experimental group was organized at one of the internats. On the first snapshots: children prior to [proper]feeding, [look like] living corpses; on the most recent photo: lively smiling faces of children in little hats, gathered outdoors around a pretty toy automobile. Here is a photo of a twenty-one-year-old fellow who weighs ten kilos. A half year later, after additional food, he gained 10 kilos. If the disability alone did not prevent him from gaining all this, who knows what is possible, if only he were able to sit . . .

Results of the trip:

1. After gaining the support of the director of the internat and [hearing] his wish to improve the life of the children, we arranged that at the beginning of December the director and nine of his associates (including teachers and nurses) make a trip to Kirovograd Oblast to a similar internat at Znamenka where they will see with their own eyes “the story, the complete outcome.” We, for our part, will pay for gas on the way.

2. It was decided to begin an active search for a rehabilitation specialist who will work on the staff and in addition receive supplemental salary from us. The director expressed willingness to provide living quarters and food to whomever wished to work at Kalinovka. This question, as well as the question of a search for student interns, were taken up eagerly by Tatiana and Sasha, teacher-physical therapists who were at Kalinovka for the first time. It was evident that these folks literally lit up with ideas for providing help to the internat.

3. After the writing of this report, we will write a project proposal that will include: pay for the work of a masseur or masseuse and a volunteer teacher-activities director; the purchase of a dry pool [with plastic balls] and rehab equipment; food for children with hypotrophy; search for volunteers among caring [?] persons for work at Kalinovka to help the aides with the care of the bedridden children. (A similar situation exists in Ivano-Frankivsk Oblast where Catholic monks look after bedridden children with motherly care.)

4. We are placing the report and a list of needs on the website www.deti.zp.ua, on the forum uaua.info, and other places and are collecting funds to begin the project.

5. Along with fundraising for salaries, we are setting a definite course of action with colleagues/associates [at the Kalinovka internat?].

We will give support to local personnel and the local populace, since Kalinovka, much like similar facilities, is simply situated too far from major population points.

At the present time there are six already committed donors to support equally a project coordinator and teacher [therapist?] at Kalinovka. These six have agreed to donate monthly a certain sum for the period of one to three years. They are Oksana Yarosh (Russia-Holland), Natalia Moshchenko (Ukraine-Spain), Tatiana Glaskova (Kiev), Dima Gorbunov (Ukraine-Holland), Olya Gerashchenko (Ukraine-Germany), and Tania (Kiev). [I omit the amounts pledged, about 20 Euros each.] I know that words of gratitude cannot convey my feelings of appreciation to these individuals. A huge thank-you to you for your humanity!

Likewise, a large thank-you to Oleg K. (Ukraine-Germany), Svetlana Tkachenko (Ukraine-Switzerland), Natalia Moshchenko (Ukraine-Spain), Olga Gerashchenko, Olga Shelomova (Ukraine-Holland), and Alyena (Ukraine-Holland) for children’s things and toys. Oleg organized the collection of donations on the forum for Ukrainian students in Germany, http://forum.sus-n.org. [Amounts donated are omitted.] I believe that a sum of 450 Euros is being raised one way or another through a list of addresses. All money transfers by you to a bank account of my husband D. Gorbunov in Holland and brought be me will be posted in the financial report for November on the website www.deti.zp.ua. (In this way we save a significant percent that would be eaten up by the banking system in the transfer of money from outside the borders of Ukraine.)

At present we still need to find six persons to provide support for rehabilitation. The principle of sponsorship is extremely simple: you make a commitment to pay monthly a certain amount, one not a burden on your budget, and, at any point, you may withdraw from sponsorship after first making this known. In this way, even if one or two persons withdraw for whatever reason at one time, it will not constitute a hardship for us or a crisis of nerves suddenly to find a small portion [removed] from the entire amount.

Here concludes our trip to the internat. We returned happy, after once more fitting all seven of us into one car. This fact is interesting: all of us gathered for this trip are twenty-seven to twenty-eight years old. A line from a song popped into my head: {“We are the young, of us, millions . . . .” Perhaps we—specifically [our] generation—will somehow succeed in changing our country.”

“Albert and Lyuda Pavlov, Sasha, Anya Gerashchenko and Mariana Voronovich—at home the evening after the trip to Kalinovka.”

After arriving in my hometown, Kharkov, I met with newly-minted volunteers who began to work two-three months ago. The youngest girl is twenty-one. It is difficult to break the ice, [dispel] the mistrust of those around us. If financial support for parents of sick children is broached, it hurts to hear as an answer: “And what do you get in return for that?” It is difficult to reconcile oneself to initial mistakes, blunders, blatant failures, sometimes obvious thefts [accompanied by such] phrases as: “You should be grateful for the conditions that we have created for you in order for you to help us.” [“We scratch your back, and you scratch ours.”] It is unpleasant to hear people say that persons only become volunteers because they themselves find it impossible to resolve various issues or problems in family life. In their defense (not myself; I am a rare exception), I can say that the majority of volunteers are extremely successful persons who, outside of their work, have a secure home life and a minimum of one small child. One may simply envy the atmosphere of love in such families ( ). And in conclusion, I wish to say, volunteers are one big family, if you wish, almost a sacred community. In each town you will find food and shelter without difficulty, and the main thing to grasp is that you are one like all others—simply a human being born to make things better for someone in this world. Everything is really very simple.

Ann Gerashchenko, Kharkov, Ukraine - Haarlem, Holland

ann.g.ko [at] gmail.com

How to make donation to sick orphans of Kalinovka orphanage?