I met Bololoy again on September 14 in Our Lady of Guadalupe Seminary, Makati City. We hadn’t met for a year. I first got to know him in the mid-1990s when we belonged to a group that met every month in Mandaluyong in the house of the Little Sisters of Jesus, contemplatives who live among the poor and support themselves by manual work. A typical community has three or four sisters, with one staying at home and the others working in factories or as labanderas. Central to their way of life is adoration of the Blessed Sacrament in their simple chapels that welcome their neighbors.
The Sisters’ welcome Bololoy for the joy he brings. He doesn’t work. He can’t read or write. He says very little. But a smile is seldom far from his lips and if he hears a lively piece of music he starts dancing. He often joins the Sisters for lunch. One day he was late and found Cardinal Gaudencio Rosales of Manila, who knows him well, sitting in his place. But Bololoy was quick to act. “Monsignor”, he said, “your driver wants to talk to you outside.” When Cardinal Rosales came back he laughed when he saw that Bololoy had taken his place.
It’s hard to know Bololoy’s age. I would guess that he’s in his 50s. For the minority he belongs to that is quite an age. In the USA persons like him have a life expectancy of 49 years as they are at high risk for congenital heart defects.
Bololoy was born with Down Syndrome or Trisomy 21. The latter name, used more and more now, comes from the discovery by Dr Jerome Lejeune, a Frenchman, in 1958, that a person with Down Syndrome had an extra chromosome at the 21st pair. He spent 40 years as a doctor turned research scientist looking for a way to serve such persons.
Each year around 55,000 persons in the USA start out life but never make it to birth: they are aborted. Ninety percent of women in the USA who discover that the child they are carrying has the 21st chromosome decided to abort their child.
Dr. Lejeune, the cause of whose beatification has been introduced in the Archdiocese of Paris, wrote of persons with Trisomy 21: “With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity: the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about: hatred of disease and love of the diseased.”
Some time ago Bololoy disappeared for about a month, leaving his family frantic with worry. But a neighbor happened to make the Wednesday novena to Our Mother of Perpetual Help in the Redemporist church in Baclaren and ran into him there. Probably the “special charm which is easier to cherish than to describe” had brought out the best in those who met him during the time he was lost. He was none the worse for the experience.
Leah is another friend of mine who has Trisomy 21. She is usually present at the weekday Masses I celebrate and is a high school graduate. Another is Vincent from Cebu, now recovering from a horrific experience while visiting family members in the USA when he had a severe reaction to a medicine he was taking. It caused much of his skin to burn and made it difficult for him to breathe. Thank God, he has come through this episode where he spent quite a few days in the ICU. Vincent has been working as a teacher’s aide in a school for special children.
I met Bololoy and Vincent through Faith and Light, a movement that grew out of an international pilgrimage to Lourdes in 1971 for persons with learning disabilities. This sprung from the experience of families being refused by groups of “normal” pilgrims. Every ten years members of the movement from all over the world gather in Lourdes from Holy Thursday to Easter Sunday. I was blessed to be there in 2001, traveling with a group from the north of England but chaplain to the small contingent from the Philippines. I was based in Britain at the time.
In each area where there are Faith and Light communities they hold a yearly pilgrimage around the feast of the Birthday of Our Blessed Mother. That’s why I was in Makati on September 14. At present there are communities only in the Manila area. A community consists of the “VIPs” – those with Trisomy 21 and other learning disabilities - parents and friends, usually young adults. They hold a celebration every month that includes time for parents to be together while the VIPs and friends have their own activity. Then there is time for prayer and the celebration ends with something to eat, usually a snack.
It’s not always easy for parents with a child who has a disability, whether a learning or a physical one. Many are born with both. But the thinking that Bololoy, Leah and Vincent are useless and that the world would be better had they not been born is utterly abhorrent. Some have described the awful reality in the USA that only ten percent of children with Trisomy 21 are allowed to be born as a form of eugenics. They are right.
There is no Faith and Light community in Bacolod. Anyone interested may contact me at firstname.lastname@example.org.
Published on Negros Times, September 29-30, 2008.