The last part of our travel to Poland I wanted to write about was a voyage to the Copernicus Museum. I didn’t feel that doing nothing except for going to the beach was the best idea of vocation. When we stayed in the University boarding house, I organized different excursions, museum visits, etc. We did some of that in Gdansk, but I wanted to do more.
I learned that boats are departing from the pier a couple of times a day, which would take us to the Copernicus Museum and decided that we should go. Funny enough, now I barely remember anything about the museum itself. Partially, because the boat was late, so we arrived later than planned and then, we had to hurry back for our return journey.
The reason for the late arrival was a storm. The waves were rocking the boat, and almost everybody got sea-sick. In our family, Anna was notorious for never getting sea-sick, and the rest of us was the opposite. I remember Anna cheerfully running around the boat while most of the passengers were miserable.
The reason I want to tell you about this trip is different. We happened to book the tickets for the cruise, which took on board a large group of families where one of the children had Down syndrome. On the way onward, I could not take my eyes off these families.
We ere not living in the Soviet Union anymore, but the way people perceived things was still very much from the Soviet era. And in the Soviet Union, you were not supposed to have a special needs child. People with disabilities, especially with mental or emotional ones, were non-existent. Invisible. There could be nothing worse happen to a mother than having a child with a disability. If we came across such a child on the street or at the playground, we would try to walk away as fast as possible.
Women, who gave birth to children with Down syndrome, were expected to leave them in the hospital, “in care of the state.” That was the norm.
A year earlier, my friend gave birth to a child with Down syndrome, and she was fighting fiercely for her right to keep the girl. But even those who supported her would say that she needs to leave her daughter “in care of medical professionals” for at least six months (there were other complications in addition to Down syndrome) and keep visiting her, and “maybe later” take her home. Her daughter died several days after, because of other complications, and my friend was inconsolable.
But I was to reiterate that the expected behavior was to leave a child with a known disability in the hospital. Nobody would criticize the mother; on the contrary, people would understand and not even mention that she ever had that child.
We felt for all mothers, who had “to carry their cross” and pitied them a lot. If you had a child with a disability, whom you chose to keep, you would only take her to the playground when there are no other children. You would never go out with her.
And here, on board of a boat, I saw two dozen families who adored their children with Down syndrome. You might ask – where is the inclusion, why a separate group of special-needs kids, but that was a huge step forward that these kids were even going out.
I looked at the mothers. I watched a mother cooing over her three or four months old the same way as if that child would be an average healthy baby. I saw her smile and could not take my sight away from her face. That was one of the biggest revelations in my life – she loved him!
I saw bigger kids, smiling, talking to their siblings, and each other. They had nice stylish haircuts and fashionable clothes. I noticed for the first time that each of them had their unique facial expression. I should be ashamed of myself because it all was news for me at that time, but I wanted to write honestly about my feelings because that can explain how bad things ere in the Soviet Union and for many years after it’s collapse.
Twenty-five years later, I can still close my eyes and see their faces and hear their voices.
The biggest takeaway from that cruise was: things can be different!