14ymedio, Reinaldo Escobar, Havana, 21 March 2019 — The agricultural market on Tulipán Street opens its doors early and buyers start arriving from several municipalities in Havana. Just outside, a well-known figure waits to offer his delivery services. He is Alain Gómez Acuña, a Habanero of 40 years with Down Syndrome.
With his supermarket cart Gómez earns his living by loading food, fruit and other products from the premises administered by the Youth Labor Army (EJT). He has been at the job for seven years and, together with plastic bag sellers and workers who staff the stands, he is part of a commercial ecosystem that runs from Tuesday to Sunday.
This Thursday, like every day, Gómez is waiting in his place within walking distance of one of the entrances of the market. He will spend a good part of the day going from one place to another pushing his cart and maybe a neighbor will congratulate him, because March 21 is World Down Syndrome Day.
Down syndrome, also known as trisomy 21, is caused by the existence of an extra chromosome on pair 21. Its incidence in Cuba is 9.8 cases per 10,000 births, according to Dr. Cristóbal Martínez Gómez, family therapist, head of the National Group of Child Psychiatry of the Ministry of Public Health.
Although the chromosomal alteration is related to diseases — mainly cardiac or digestive diseases — which tend to shorten life expectancies, society has historically tended to focus on the mental retardation that sometimes accompanies it. On the island, the stigma over families with children with special needs has been frequent, although in recent years important steps have been taken in the social integration of these people.
The families of those affected have joined in support groups and, slowly, have managed to displace the derogatory language by more respectful words. However, there is still much to be done to ensure that society protects the rights of Cubans with Down syndrome and allows them to occupy an active and independent place, without ridicule or excessive commiseration.
Gómez smiles as a customer from the market engages him to take a large pumpkin and some tomatos to her house “climbing Tulipán hill.” Those who know him know that his family, an elderly mother and stepfather, also depend on his efforts, and the economic contribution of this son eases their day-to-day existence.
“Families need to know that the tendency to ’hide’ the situation by preventing the child from leaving the house will cause more pain and tension,” Dr. Martínez tells families who have a child with Down syndrome. “They show great fondness for music, they are happy and rarely suffer from attacks of irritability,” he says.
In his work and in the building where he lives, the neighbors joke with Gómez and tell him that he has become a millionaire delivering products from the market. He smiles nervously, as if they had discovered him, and the laughter covers his whole face. Sometimes he offers to carry some unpaid cargo, just to help an elderly woman or someone of low income.
In addition to the economic contribution he brings with his work, Gomez helps out with domestic chores, taking care of washing and ironing his clothes and cooking from time to time, according to his mother. On days when the EJT market is mostly idle, with little merchandise and fewer customers, he lends a hand in the bicycle parking lot or helping at the stands.
His permanent smile is only hidden when he has the impression that some client wants to deceive him with a very low payment or is trying to avoid paying him any money at all for his services. Then he gets so serious that he instills respect, as he does when they ask him how he got the supermarket cart with which he travels the streets of Havana.
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