Disabilities, a magnifier of our humanity

I am a creature of habits and rituals. Going every morning to have breakfast at Bar Brenna in my neighborhood when I am back in Italy is one such habit. The main reason why I have loved going there since I was a child is because I often find Gabri there. Gabri is the son of the owners. He takes the liberty to assess who is worthy of being served by him. If you are an old lady, for example, you will be the last to be served. If you are a young one instead, rest assured to have his uttermost attention. Once, his parents reproached him because he was serving me before a group of grannies who had been waiting longer. He just shrugged and unapologetically shouted, “I can’t help it if they’re old and she’s beautiful instead”. Another time, I found him polishing and piling up pennies. When asked to give one out, he nervously told me those were his money to sell. Before you build up in your mind an image of Gabriele as Berlusconi junior, Gabri is a wonderful man with Down syndrome who cannot bother to lie and who is generous in general if you do not ask him for one of his chocolate pennies. Two years ago, on New Year's Eve, I met another guy with Down syndrome who as soon as he met me asked me “What’s your purpose in life, Vilma?”. I wanted to hug him because I also cannot stand small talk. When I told him I wasn’t so sure yet, he told me his Plan B was to become a Pope, if the sister of Andrea, our host, wouldn’t accept his marriage proposal one day. He even knew already the name he’d take as a Pope. “Pope John Paul III”, because Pope John Paul II exhorted everyone to not give into fear. His fear was to not be loved and to not survive the many heart operations he had had. I tried to tell him it is a fear a lot of us share that of never being truly loved and that love isn’t meritocratic anyway. I don’t know if he believed me but he surely is a memory that melts my heart.?

Yesterday, it was World Down Syndrome Day and since I love someone who has it, Gabri, I ventured a bit into research on the condition. Down syndrome is also interesting because of all the? conditions it is less impairing. So it is a good point of analysis to reflect on how far we’ve reached in creating a life that truly respects diversity. Needless to say, I often question whether the work we have done on “inclusivity” has ever gone past quotas, blah blah blah and empathy show-offs. The situation is both dramatic and hopeful. On one side, it has never been easier to be someone with Down syndrome than now. In most of the wealthy countries, the life expectancy of this group of people has more than doubled. They have better access to education, which allows most to learn to read and write. Something that wasn’t at all the case just a few decades ago. Moreover, no one would publicly speak about “eliminating” Down syndrome as was the case in the past. Or call a child with the syndrome a “mongoloid idiot”, the term used before chromosome counting became common in the last 60s. Nor it is common anymore to send these kids to state institutions.?

And yet, the number of kids with Down syndrome being born is at its minimum. We speak of inclusivity much more than ever. People can aspire to reach places that were precluded to them a few decades ago. But apparently, scientific progress doesn’t help us in making choices that accept the “diversity” and “inclusivity” we talk about. We might not speak of “eliminating” the syndrome anymore but that is what we are doing in practice. Two years ago, Ms Crowter, a lady with the condition, appealed a law in the United Kingdom that she deemed discriminatory towards people with Down’s syndrome. A law that she felt doesn’t respect the lives of people like her. The law allows terminating a pregnancy even after the limit of 24 weeks in the case of “a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped", which includes Down's syndrome. She lost the appeal but she reminded everyone that the law was made back in 1967, a time when people like her were not even allowed to go to school. She claimed she hoped the laws would finally catch up with the progress that has been made.?

The concept of progress is central to me. Even the newsletter was born in the light of “questioning if all progress is truly progress”. Denmark is often hailed as an example of progress in many aspects. It was also one of the first countries to introduce “universal screening”, and since this was introduced the number of kids born with Down syndrome has fallen sharply. Only 18 kids were born with such a condition in 2019. It is an interesting case also because on the surface this is a country that is not hostile to disability. It entitles people with the syndrome to health care, education, and even money for special shoes that fit their wider, more flexible feet. In practice though, the universal screening brings to mind “eugenics”. While eugenics isn’t a systematic and violent practice as it was in Germany, the policies being promoted have one main goal: improving the health of a nation by preventing the birth of those who are considered a burden to society.?

This is a word that evokes the horrid events. Still in the 20th century, in the USA, forced sterilization of the “feebleminded” was practised. It then inspired the racial hygiene of the Nazis who gassed, used them for experiments or killed people with disabilities. Denmark, too, drew inspiration from the U.S., and it passed a sterilization law in 1929. Over the next 21 years, 5,940 people were sterilized in Denmark, the majority because they were “mentally retarded.” Those who resisted sterilization were threatened with institutionalization. But at that point, nobody thought of eugenics as something morally wrong. It was a mainstream scientific pursuit, as eugenicists believed that they were bettering humanity.

It is such a sensitive topic that it is impossible to not offend different sensitivities from mine on this.? The other option is to not talk about it at all. But that’s not my style. I’d rather risk it. I feel deeply for the parents who have to make such a decision. Knowing that you would have a child that from the start you know won’t live a life that conforms to all the timing and goals of the other kids is not easy. And the love of a parent should be unconditional, choosing to sever such a relationship at the start is a taboo. Because we have to grapple with the uncomfortable reality that even this kind of love can be conditional. But, as much as I try, while I might understand who chooses to screen out a child with a condition that makes life almost impossible, I do not understand why Down syndrome would lead to such a choice. It is among the least severe genetic conditions that are being screened. It is compatible with life, even a happy and fulfilling life. So, is science being used to foster a society that makes diversity possible or to craft a society that is as least “disturbing” as possible??

Modern reproduction is more and more offering ways for parents to choose what kind of child to have. We are “designing” our babies. Sperm banks, for example, now offer detailed donor profiles delineating eye colour, hair color, education. Also, they screen donors for genetic disorders. Many parents have already sued such companies for undesirable genes such as autism or a degenerative nerve disease. I question whether the commercialization of reproduction is turning people into products. If a child is merely a product on what basis are we choosing? We are choosing on the premises that such a child is a reflection of our perfection and his likeliness to achieve in life. But this is in contrast in my opinion with the goal of love, which is to humble us and transform us. Are we transformed when we avoid the uncomfortable??

Rather than improving humanity, I fear we are reducing it. I start from a point where I do not even think we have the right to decide whose life is valuable, but that’s a philosophical discussion for another time. I just want to point out that the lives of my cousin A. and my friend M. who both have a motor disability are just as important as mine. That discomfort of helping them to go to the toilet in a busy airport in Berlin or carrying them on our shoulders to go to a nice private beach has been physically draining but also a magnifier of goodness. They were an occasion to see that there’s so much help and goodness out there among so much indifference. It is also a reminder that at the New Year’s Eve party, nobody stuck in my mind like our future Pope with Down syndrome. I do not want us to renounce to other ways of seeing life, I want us to make it possible.?

Vilma Djala

ASSUME THAT I CAN | World Down Syndrome Day 2024

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