For many 19 year olds, the world is a place of growing possibilities and increasing independence. Not for Nikolai Titkov. Thin and pale, he spends nearly all day, every day, in bed. Pushed against a wall in his narrow bedroom, the bed is a jumble of blankets and pillows with a table strewn with medicines at its foot. When he was 5, Nikolai—or Kolya as his mother, Tatiana, calls him—was diagnosed with a condition in which his muscles waste away. Over the years, he has lost his ability to walk, write, or bathe himself—relying on Tatiana to care for most of his needs.
Even when Kolya does get out of bed, a dangerous exercise given how brittle his bones are, he cannot move around easily. The Titikov’s third-floor municipal apartment in the city of Orekhovo-Zuyevo in the Moscow region is small and cramped, with narrow corridors that make maneuvering in a wheelchair from the bedroom to the kitchen and bathroom all but impossible.
Getting out of the apartment is even more arduous: the building has no elevator, and the paths that lead to the streets are frequently covered with ice during the winter.
At least 13 million people with disabilities live in Russia. In recent years, the government has taken important steps to show it is committed to ensuring the rights of people with disabilities, including ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2012. The treaty obligates Russia to protect the fundamental freedoms of people with disabilities and ensure their equal access to transport, the physical environment, information, communications, and public facilities and services.
A multibillion-ruble Accessible Environment Program (2011-2015), aims to increase access for people with disabilities to education, health care, information, transportation, and other public services in several Russian regions. And in March 2014, Russia will host the Winter Paralympic Games in Sochi, where approximately 1,300 athletes with disabilities will compete in five winter Paralympic sports.
But progress remains limited. For many people with disabilities like Kolya, daily life remains restricted by physical and social barriers that keep them sidelined from mainstream society, and without adequate education, meaningful employment, or the ability even to leave their homes. Teachers visit Kolya occasionally, but he is unable to attend school. He has forgotten how to read, and his contact with peers is limited to occasional visits from the children of parents Tatiana met through a disability rights group she founded.
Tatiana’s attempt to get the local government to provide Kolya with rehabilitation have fallen on deaf ears, and she and Nikolai must travel to Moscow and spend several nights in a crowded hospital room to obtain health services. The family lives on funds provided by Kolya’s state disability pension and palliative care charities in Moscow.
Last year, things seemed to take a turn for the better. After a series of written complaints and legal battles over the course of seven years, the Titkovs won a court case in the Moscow regional court. The court ordered the Orekhovo-Zuyevo city administration to relocate them to an apartment that meets requirements mandated by Kolya’s state medical documents—including a first-floor location (or an apartment with an elevator) and appropriate temperature regulation. Tatiana also dreams of a balcony for Kolya to sit on.
The city was supposed to relocate them by November 25, 2012.
But all the accommodations that the city has offered the Titkovs since the court order have failed to meet Kolya’s medical requirements. So Kolya remains in his old apartment, three floors up, in his bed for weeks and even months at a time.
Asked where he would go if he could leave the building on his own, Kolya said: “I’d do things like go to the store and pick out vegetables. I’d go shopping at IKEA, where facilities are [wheelchair] accessible. I’d keep an eye on things, and call the police if I saw that people were up to no good. Those are the kinds of things I would do.”