Preserving the memories that remain: Hansen's disease heritage in São Paulo

In 2016, the Hansen’s disease prophylaxis and treatment assistance system of São Paulo was recognized as a cultural heritage by the Council for the Defense of the Historical, Archaeological, Artistic and Tourist Heritage of the State of São Paulo (Condephaat). The decision was based on technical studies, which showed the representativeness of this complex by bringing to light several past and present issues.

According to these studies, the assistance system was implemented following the isolation hospital model adopted in the late nineteenth century in several places around the world. In Brazil, projects of this type appeared in the 1920s, in a eugenicist and hygienist context, in which compulsory internment (segregation) was imposed by Law 2,169, of December 27, 1926.

In São Paulo, the landmark was Decree 5.027 of May 16, 1931, which determined the formation of the so-called "prophylactic tripod", comprising:

• Colony Asylums (Colonies, and Colony Hospitals): in remote places, with buildings and regulations that ensured the  compulsory confinement of people affected by Hansen’s disease; 

• Dispensaries: outpatient clinics used for examination, screening, and referral of people affected by Hansen’s disease and ‘communicants’ (people who had been in contact with the sick);

• Preventoriums: ‘orphanages’ that housed the healthy children of persons affected by Hansen's disease who had been hospitalized (segregated) in the colony asylums. 

The 1931 decree also ordered the construction of five colony asylums: Santo Ângelo (1928, Mogi das Cruzes), Padre Bento (1931, Guarulhos), Pirapitingui (1931, Itu), Cocais (1932, Casa Branca) and Aimorés (1933, Bauru), the locations of which were based on the railway network of the time. 

Besides the ‘Carville’ type treatment pavilions and residences, the colony asylums were designed to function as guarded mini-cities, with healthy, intermediate, and sick zones. They had spaces and buildings to meet the needs of those who lived there: from the supply of goods and services (factories, warehouses, hairdressers) to leisure (theater, casino, soccer field) and religious assistance (churches and temples).

Residents (or inmates) assumed a new identity and dealt socially and emotionally with the reality of their confinement. Separated from their families, their contact with the world beyond the walls was restricted to the ‘parlatory’ (a fenced and guarded corridor). They were also subjected to painful experimental treatments and lived under precarious conditions. 

In most cases, asylum life began with forced entry at the gate and ended with burial in the cemeteries. With the abolition of compulsory internment in 1962, a large part of the surviving inmates decided to stay in the asylums because they had no contact with family members and nowhere else to go. The former patients and their descendants who still live in the asylum complexes face a constant threat of eviction, living in limbo and uncertainty.

These issues are evident when we focus on the situation of the children of inmates. Minors were not always kept in the asylums with their families, only having contact with prior permission on pre-determined dates. Children born in the asylum were immediately removed after birth and sent to preventive clinics to avoid contagion. Most of them were never again to meet their families.

Studies to preserve the heritage of Hansen's disease have identified the Preventorium Santa Terezinha in Carapicuíba and the Preventorium in Jacareí. These institutions imposed disciplinary measures on children aimed at cutting the ‘stigmatized’ ties and erasing the past to facilitate social reintegration. 

Recognition as heritage (with the exception of the Padre Bento Asylum) followed the criteria established by technical studies for the selection of buildings and the definition of guidelines for the preservation of the system: 1) non-existence of the remaining architectural complexes; 2) architectural or historical exceptionality; 3) relevance to the network's operation; 4) degree of conservation.

The dispensaries were not recognized as heritage because they were not constructions specifically planned for the assistance system. In relation to the cemeteries, the state of conservation was the main criterion adopted for the selection. In this sense, the São José Cemetery (Pirapitingui Asylum) was recognized because it is still within the limits of the current hospital complex and has the highest index of identification in the graves. The other cemeteries were nominated for recognition as Sites of Cultural Interest due to the relevance of these spaces in preserving memory and for the process of restoration.