Misplaced Outrage: Down Syndrome and Abandonment in Ex-Soviet States

Last week, a story involving Samuel Forrest and his newborn son with Down Syndrome sparked incredible debate around the world. The father claims he was given an ultimatum by his wife: give the child up or file for divorce. He chose to keep the baby and is now attempting to move from Armenia, where the child was born, to New Zealand (his country of residence). The mother has since refuted the accusation that she gave her husband an ultimatum or that she wanted to give her baby up.

Social media is now awash with different takes on the situation. Some have pointed out that one parent taking custody of a child the other parent doesn’t want happens all the time and isn’t newsworthy when you discount the gender reversal. Others have labeled the woman a monster, lambasting her for trying to give up her disabled child.

Yet lacking in this debate is the harsh reality that 2 million children with disabilities face in former Soviet states and Russia, where institutionalizing a child with developmental disabilities is a common occurance. This mother, if she did intend to give her baby up, was doing something that countless mothers have done in this part of the world for decades. So why are we focusing on one occurrence, when the reality behind it deserves a far more in depth examination?

To understand why orphaning disabled children is a widespread practice in the region, we must look at the history of the Soviet Union. During its reign, it was not just normal, but state mandate that parents relinquish children with developmental disabilities to state run orphanages. One of the reasons for this was the rise of ‘defectology‘ or the study of disabilities, and the belief that doctors and social workers were the only ones with the skills necessary to properly raise these children.

Resources for parents, and even a basic understanding of the disabilities their children faced, were widely unavailable during this tumultuous era. Other issues, such as food scarcity, meant the role of housewife or caretaker vanished and women were expected to find work outside the home (and help move the Soviet cause forward). This combination of lack of resources and time when combined with heavy governmental control meant for many parents that institutionalizing their disabled children made sense.

From the governmental perspective, institutionalizing disabled children was an attempt to create a society that, from the outside, looked “ideal.”

Now, even though the Soviet Bloc has dissolved and many of these countries have been absorbed into the EU, which has much different regulations on how to care for a child with disabilities, the lingering tradition continues. It is not seen as cruel or distasteful, but simply something that you do for the good of the child and society. Sergey Koloskov, whose child was born in 1989, speaks about the difficulties he faced when he found himself in a similar situation,

“We encountered discrimination…when the doctors strongly suggested that we should immediately place the child in an orphanage as a ward of the state. When we did not agree to do so and brought our daughter home, our family was left to face its problems without any help from the state. Later on, we learned from other parents of disabled children that we were entitled to a small pension… However, we received nothing for the upbringing, development and rehabilitation of the child.”

Although admirable, Koloskov’s case is in the minority. One current study concluded that less than 15% of children with Down Syndrome remain with their parents, with “85% going straight into public institutions.” This accounts for 2 million disabled children currently being institutionalized in ex-Soviet republics and Russia.

To battle this, numerous disability rights groups have sprung up and the EU has poured money into countries like Romania, Hungary and Bulgaria to help close these orphanages and assist parents who have children with disabilities.

However, in former Soviet states that aren’t part of the EU, like Armenia, the reality is, even in large metropolitan centers, resources for parents remain incredibly scarce and stigma remains high. A few social programs and rights organizations that have taken root in Armenia over the years include the Armenian Relief Society and UNICEF Armenia. However, most specialists agree that basics, such as providing parents with adequate schooling for disabled children, socialization programs and community acceptance, will take years.

If the story of the Armenian mother who perhaps gave up her disabled child should teach us anything, it is how common this issue actually is. This mother is not exceptional, nor is she a monster. She is doing what is, sadly, quite normal in this part of the world. So rather than demonizing one person and expressing indignant (and naïve) shock at her actions, let’s look at the enormity of this plight and express shock at the scarcity of resources currently available to parents in these situations.

This shouldn’t be about one baby who is lucky enough to have a foreign father who is now half a million dollars richer thanks to his GoFundMe page. The conversation ought to be about the newborns who are put through this system every day, yet are too unspectacular to garner their own outrage in our news cycle.

109 comments

Jim Ven
Jim Ven1 years ago

thanks for the article.

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Margaret G.
Margaret G.1 years ago

Wondering if Armenia has laws against abortion and if the parents knew that their child had Downs..

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Paulinha Russell
Paulinha Russell2 years ago

Noted. Thanks

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joan silaco
joan silaco2 years ago

i am wondering if these people know ahead of time if their child will be disabled, and decide to have the child instead of aborting it. because if their intention was to abandon the baby anyway once its born, knowing full well that the baby will be disabled, why do women get ostracized for making the decision to have an abortion? in other words, there are women that have the baby and then dump it in the dumpster or behind the toilet, or even try to flush it down the toilet? but in their mind they did know wrong because they had the baby even though they dumped the baby after being born? and if people think that's bad, they do worse in india and china because of gender! i would not pass judgement on any woman because she has to live with her decision for the rest of her life and whose to say she is not suffering too?

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Marilyn K.
Marilyn K2 years ago

I don't consider a Down Syndrome Child disabled. Their needs are a little different but they grow up to be loving individuals that have to participate on a different level. They learn, work and know how to take care of themselves.

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jan b.
jan b2 years ago

Raising a disabled child is perhaps too expensive for many to deal with and some need special care. I chose not to criticize....I have not walked in their shoes.

Life can be cruel. Life isn't fair.

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Ann Bodimeade
Ann B2 years ago

Thank you for putting this in context, I hope people will donate to UNICEF and the other agencies that are helping these other disabled children as generously.

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Janis K.
Janis K2 years ago

Thanks for sharing.

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Melissa DogLover
Melissa DogLover2 years ago

I would gladly dump my spouse if they didn't want to accept my child as they are-- no matter what their age. The wife is now just saying differently because it became viral on the internet. I hope the dad gets full custody of the child, since the wife didn't want the child anyway due to his down syndrome.

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