As I was finishing up college, I was struck by a strong urge to live abroad and experience life outside of America. A chance conversation led to a connection in Kalinovka, a state institution (or internat) for children with disabilities. It was here that I ended up spending about 6 months working with a bunch of children who quickly became very special to me.

Kalinovka is a significant part of my life, but because it's a complicated and confusing place it can be difficult to share this part of my life with others. To completely sum up Kalinovka in a handful of paragraphs is an impossible task, but the following article outlines what I consider to be the most important elements of its history, people, and current state of affairs.

It would be hard to miss the ugliness of Kalinovka. I don't mean things that are visually unpleasant, but the truly ugly things that most of us never have to contend with: the smelly, dirty kids, the bland mush hastily shoved into their mouths at meal times, the drool and snot that goes unwiped from their faces, the mouths of young children full of rotting teeth, the unchanged diapers, the nannies that yell at energetic children and walk away from crying children, seeming to hardly see them, the toys kept behind locked doors or out of reach on tall shelves, the rocking and head-banging of bored and unloved children…sitting in my comfortable home in America, far removed from Kalinovka by thousands of miles and months of absence, sometimes I almost forget that not only does this place exist, but it is the only reality hundreds of people have ever known.

You can find Kalinovka in a rather forgotten corner of the world in south-eastern Ukraine. The surrounding landscape is beautiful, especially during the warmer months when the fields are full of ripe sunflowers and wheat, and the sunsets are absolutely gorgeous. The buildings at Kalinovka were sturdily built almost 200 hundred years ago and continue to stand reassuringly solid even when they slide into disrepair. I think outsiders also find a kind of sad beauty in the poverty faced by the local residents, who I've generally found to be kind and curious, if also somewhat aloof and unsure of what to do with a foreigner.

So what happened that such a miserable existence was created for so many people here? From what I've read and heard, this is my understanding of Kalinovka's past:

In the late 1910s and early 1920s, the Communist government persecuted both religion and wealthy colonists, and the German Mennonites who had created the community at Kalinovka either emigrated or were killed. Around the same time, Stalin decided disabled people didn't have a place in his worker's paradise since neither disabled people nor the mothers who would need to stay home and care for them would be productive. Kalinovka's buildings were soon occupied by disabled children, and similar institutions were popping up all over the Soviet Union. Upon the birth of a disabled child, parents were told that their child would receive better care in a state institution, and the baby was placed in a baby home as a ward of the state. Children were typically transferred to a psycho-neurological children's home such as Kalinovka around the age of five. The ones who survived childhood there were then moved to an adult psychiatric facility around the age of 18, where they stayed until they died. Consistent from one placement to the next was the same lack of nutrition, medicine, material comforts, attention, education, exercise, therapy, and care. Physical abuse, neglect, and early death were common, and there was virtually no chance of leaving the institution to integrate with the rest of society.

In recent years, conditions at Kalinovka have improved dramatically. There are more caregivers, a handful of teachers provide basic education and therapy, children receive better nutrition, kids spend more time in common areas and playrooms than in their beds, there has been a big push to get kids outside more often, and select groups of children have had opportunities to take day trips to places such as the zoo and the beach. And of course the most notable accomplishment to date has been the creation of "Happy House", a recently-renovated home where nine boys live in a family style setting.

I love listing off all of these accomplishments. Each one is a result of sheer determination, persistence and hard work on the part of an outside organization called Happy Child, as well as an admirable amount of enthusiasm and patience to accept new ideas on the part of Kalinovka's administration and staff. Ukrainian state institutions aren't always known for being open to outsiders coming in and making changes, and it's remarkable that this children's home, located quite literally in the middle of nowhere, is making such an effort to improve living conditions for its many residents.

But let's look at reality for the staff and residents at Kalinovka. As great as all those accomplishments are, there is much that hasn't changed. The vast majority of these kids will never know the love of a family, since it is still common practice for parents to relinquish their children as soon as a disability is detected. Day-to-day life for the average child in Kalinovka is pretty grim. Meals are hastily fed, diapers changed just as quickly, and most of the day is spent idly in front of the TV (often watching soap operas, but some days the shows are appropriate for children) or in some corner of a play room, where they are left to entertain themselves. Many of the kids spend part of the day outside when the weather is decent, but the less lucky ones will have to wait weeks, months, or even years before they get a chance to leave the building. After lunch there's a nap or quiet time that lasts for several hours, then it's time for dinner and more idle time before going to bed. What's lacking? Individual attention, therapy, education, physical exercise, mental stimulation, medical care, and love.

Of course, the next question is: "Why?" Why is this the reality for so many children? Why are conditions so bad? Why aren't things better? There is no straight answer, but I'll share what I've come up with:

I think the root of the problem is that these institutions have been around for a long time and are deeply entrenched in a complicated system. People are so used to the practice of warehousing disabled people that it's become the norm, and most simply don't question it. Those who are appalled by the conditions and want to make improvements encounter a daunting bureaucratic system so full of red tape that it's incredibly challenging to get anything done.

Also problematic is that Kalinovka and similar institutions are a mainstay of the local economy. The internat draws staff from four local villages, and there is virtually no other employer in the area. The internat also runs a farm, which occupies the majority of local farmland and owns much of the livestock. Without jobs from the internat and without the produce and extra income from the farm, local people would lose their livelihood and the villages would quickly die. To sustain an internat there must be residents; thus children and the regular state support that comes with them continue to be sent there, and the vicious cycle continues. There are also many government employees who earn their salaries by maintaining the current system of internats, and we can assume they would be unwilling to change the system if that would sacrifice their income.

Funding is an issue, but not necessarily because it is lacking. Rather the problem is where and how money is spent, as well as available resources. The government provides a decent amount of money per child, but it is common for it to be spent on an inefficient heating system, used to acquire equipment that isn't entirely appropriate, or in some other way that doesn't maximize its potential. Sometimes this is because Kalinovka's administration isn't aware of more cost-efficient alternatives, but sometimes it is because their requests are ignored by government officials.

It is also difficult to hire qualified staff. Kalinovka's administration and Happy Child have been searching for sorely needed doctors, therapists, and psychologists for years, but they have been unable to locate professionals in these fields who are willing to work for a small salary in such a remote location. Doctors occasionally visit Kalinovka, but this happens rarely and they only come for a day. The 120 residents at Kalinovka have a wide variety of complicated disabilities, and one day is not sufficient time to examine and provide or recommend appropriate treatment for all of them.

Next let's consider the staff who do work at Kalinovka. The nannies and teachers are the only caring adults present in the daily lives of these children, and these women (for it is always women who fill these roles) lead exhausting lives. At work, the nannies are incredibly understaffed; it is typical for one caregiver to be responsible for 10-12 children. Their knowledge of special-needs children is limited since they have received little or no training or ongoing professional development. In addition to caring for the children, they are also expected to clean the residential buildings. When they are not working long 12-hour shifts, the nannies are at home, where they are responsible for cooking, gardening, raising children, cleaning, and all other tasks associated with surviving and maintaining a household. And they do all of this without modern conveniences such as easily-accessible shopping centers, time-saving home appliances, or even indoor plumbing.

Some of the staff obviously care about the children: these are the ones who coddle individual children, speak to them kindly, comfort them when they cry, and can be found playing or walking with the children. Unfortunately, there are also some who clearly don't want to be there. I sense some are bitter as a result of living a difficult life with few alternatives and are resentful of having to care for the children. Some are there exclusively because they need the income, whether or not they are interested in working with children. Others have been working there as long as 30 years and are probably just tired. Regardless of the reasons behind their behavior, I've always found it hard to witness their harsh words and obvious indifference towards the children under their care.

But at the end of the day, the above considerations barely skim the surface of what is so terrible about Kalinovka. The real tragedy lies in the sheer number of lives completely lost to Kalinovka and similar institutions. It's awful to think of all the kids there, bursting with life and just waiting to be loved. These kids aren't just numbers of bodies taking up space; they are real living people full of personality, intelligence, interests, and energy who will never have a chance of anything better because they have a disability. Sure, a select few may be lucky enough to find themselves adopted by a caring family. A somewhat larger number will hopefully be placed in family-type homes until they age-out of Kalinovka. But the vast majority will be quietly forgotten until they reach adulthood, when somebody remembers them long enough to transfer them to an institution for adults. There they will again be forgotten - this time in conditions worse than those at Kalinovka - until they die.

Certainly I'm optimistic about all of the progress that continues to be made by caring and energetic people. But how many years will it take before disabled children aren't immediately relegated to lives of nothing? How many more people will die without ever having a chance at life? Over four hundred children are already buried in Kalinovka's cemetery, and hundreds more are languishing in adult institutions or their cemeteries. This easily accounts for over a thousand children, without even considering that this scenario is played out in a frightening number of similar institutions all over the former Soviet Union. Hopefully the situation will improve in the future, but in the mean time thousands of children will continue to suffer in these institutions. This is the tragedy that always hits me the hardest.