Misja Kiseljov came in just after 10 am, holding his mother Tatjana’s hand. “At birth, his central nervous system was damaged, leaving him retarded,” she explained, while taking off her 26-year-old son’s coat. Misja is unable to walk the streets alone. Het stops to caress anyone he runs into and laughs to himself a lot.

Tatjana escorted her son to the classroom. “I am so happy that I can bring him here twice a week since December,” she said. “He sat at home doing nothing for a year. Here, he can be with other people so he doesn’t need to be so alone anymore.”

Five other mentally impaired people trailed Tatjana and her son, as they strolled through the hallways of the former supermarket that is now home to Tourmaline anthroposophic day-care centre. The air was cold in the building, which was going through yet another power blackout. “Now we won’t be able to prepare tea or food,” said Remco van der Plaats, the Dutchman who, together with his Russian wife, founded Tourmaline.

A communist legacy

The plight of Russia’s mentally disabled is a harsh one. Affordable care is scarce and mostly given by a handful of private institutions in Moscow, like Tourmaline. These organisations receive little money from the government and are mostly dependent on charity for money.“The city of Moscow pays our utility bills and has given us this dilapidated space free of charge,” Van der Plaats said. “Our salaries are low. Both the cook and the director earn 422 euros a month here.”

The lack of care for the impaired illustrates the sorry state of almost all of the country’s health care. The lingering heritage of the USSR plays a part. In the Sovjet Union, disabled people were not supposed to exist, since communism produced only perfect people. Misja’s mother remembers the time well. “They were committed to institutions,” she recalled angrily. “Parents were ashamed of their children, which broke up many marriages. But today it is not easy either. A group of mentally disabled people was refused entry to a swimming pool recently, because people feared it might be contagious,” she said.

The taboo is slowly being lifted in today’s Russia, as the matter is being discussed more openly in newspapers and on television. Doctors still routinely advise parents to commit newborn children suffering from Down’s syndrome to orphanages however, even though statistics show that half of them will die there within a year because of inadequate care. Children who remain at home have a 90 percent chance of surviving.

1 caretaker for 17 patients

“Most care facilities have only two nurses and two caretakers for every 70 patients,” Van der Plaats said. “With those numbers, there is really little those people can do for their patients. We are different. We can accommodate 18 disabled people and have one-on-one supervision. Unlike Russian institutions which tend to pigeonhole disabled people, we let our patients with different disorders mix, including autistm, epileptia and Down syndrome.”

Tourmaline has also developed an educational programme for social therapists at Moscow’s Pedagogical University and is currently, together with other private institutions, building a special village near Smolensk called ‘Clear Springs’. “Adult handicapped people can live supervised lives there if they are left without caretakers after their parents die,” Van der Plaats said. “Their stay is paid for by the 234 euros they receive monthly in benefits.”

Good morning sun

In the classroom, disabled people and their caretakers stood in a circle. “I see the sun, the sun sees me,” they sung. “I see the sky, the sky sees me. I see the earth, the earth sees me. Good morning.” Little Kristina started clapping loudly, causing the 25-year-old Valeri visible distress as he grasped his ears. “He is very sensitive to sound,” his supervisor Olga said.

After they were done singing, all the patients went their separate ways, leaving for woodworking, candle-making, ceramics or cloth workshops. The spastic Zjenja and Sasja remained in the classroom for musical and linguistic therapy.

Meanwhile, managing director Rudolf Grigorjan, a former chemist, studied the renovation plans for the daycare centre. “This is not good. The municipality wants to give other organisations a shot at this location,” he said. “If we are unlucky we may soon need to make way for an athletic club.”

Misja could care less, it seemed. Sitting at his loom he smiled at himself.