At this point, nearly everybody has seen it. A New Zealander man, an Armenian woman, a baby with Down Syndrome, and a GoFundMe that showed that the world cares.
According to the Samuel Forrest’s GoFundMe account, the boy’s “Armenian mother and her family abandoned him at birth. His father, a New Zealander, was no longer welcome in the family home because he wanted to ‘keep’ Leo. The mother refused to even look at or touch the newborn for fear of getting attached in a society where defects are not accepted, often bringing shame on the family involved.”
The mother, Ruzan Badalyan, has since weighed in and given her side of the story, saying that she was doing what’s best for the child, which was to send him to New Zealand where he would have support and services.
The Internet at large has predictably vilified the mother and hailed the father as a hero, raising half a million dollars to help the father care for the son. And then there is the flip side of the story, one of a heartbroken woman who was being painted by her estranged husband as a monster, who was doing her best to look out for her disabled child. Is he right? Is she right? Is little Leo going to be taken care of or disposed of?
The truth is, neither side matters. I mean, of course it is horrible to think of a baby with Down Syndrome being dumped into an orphanage, but Leo is not the biggest victim here. Leo, with a father from New Zealand and a story that makes good media, won Armenia’s Down Syndrome lottery. From the moment his father looked at him and decided to do what was expected of him as a man from New Zealand, Leo’s been one of the lucky ones.
The focus of this story should not be on Leo, who will have support and social services, who will grow up in a society where organizations throw balls for people with Down Syndrome. The focus should be on a culture that pressures parents to discard children with Down Syndrome, on the factors that led up to this situation in the first place. There are nearly 8500 children in Armenia with disabilities, children without a foreign father who can (according to the norms of his culture) sweep in and take them away.
Because regardless of whose side you are on, both parents made it clear that raising a child with Down Syndrome in Armenia is a terrible option. Dropping a baby with disabilities off in an institution in Armenia is not out of the ordinary.
The risk for children with disabilities to be separated from family and placed in an institution such as orphanage or special boarding school is much higher than for other children. One out of every 6 children with disabilities or 16 per cent lives or studies in an orphanage or special boarding school.
The idea of placing Leo in an institution did not come out of a vacuum: It is culturally appropriate to hide children with disabilities, to keep them out of public life.
And once in those institutions, the children face an uphill battle, never learning the skills required to survive and thrive in society.
More than 10,000 children in Armenia are currently enrolled into special schools with as many as 40 per cent staying on full board. Studies show that this reliance has led to the emergence of an “underclass of children marked by poverty, stigmatization and a lack of proper care and education who are likely to lack opportunity as adults.”
Even without disabilities, spending their lives in these kinds of institutions has a large negative impact on the children.
According to Anna Mnatsakanyan, the international relations coordinator of the Armenian Relief Society (ARS) in Armenia, children in orphanages are not only deprived of parental care, but they become part of a “sub-culture” of orphanage graduates, often marginalized by society at large.
And if they manage to make it out of the orphanage (or are raised at home), they face a bleak future as an adult with a disability: “According to the report published by USAID and Save The Children around 90% of Armenians living with disabilities are without employment.”
Again I will say: Leo is lucky. Even without the media, even without the $500,000, he is lucky.
So what do we do?
- Stop vilifying women just because it’s easy.
- Pay attention to context. Actions that seem monstrous or heroic in one context may be a part of a system of norms (horrible or otherwise) in another. It’s much more effective to confront the norms that create the situation than to try to judge every situation that the norms create.
- Instead of donating money to the luckiest kid with Down Syndrome in Armenia, look for organizations that are fighting the systematic problems of disability inclusion — Unicef, Disability.am, and Bridge of Hope are a few.
I don’t think that this story has a clear villain or hero — it seems to me that both parents were following the script that their cultures gave them. Let’s work on creating good scripts, rather than focusing on those who read them.