14ymedio, Reinaldo Escobar, Havana, 24 July 2017 — In a crowded bus, two women discuss who is entitled to the disabled seat. While one carries a cane, the other shows an ID card from the Cuban Association of Limited Physical Engines (Aclifim), an official entity with more than 74,000 associates that sets ideological requirements (i.e. fidelity to the government) to maintain membership.
Aclifim, along with the National Association of the Blind (Anci) and the Cuban National Association of the Deaf (Ansoc) call themselves Non-Governmental Organizations. However, complaints about their political bias led a group of activists to create a support group for people with disabilities without any conditions.
The Cuban Inclusive Culture Network, created last year, faces a difficult challenge in a country where much remains to be done for the social integration of people with disabilities. Added to this is the lack of legal recognition that allows its members to work under legal protection.
Juan Goberna, one of its founders, woke up one morning and was not even aware that it was daylight. After several operations that failed to restore his sight, he decided to start using a cane. In those early days in the dark he approached Anci hoping to take a Braille course and receive a computer program that read texts aloud.
Accompanied by his wife, Goberna arrived at the NGO’s office in the municipality of Central Havana with his identity card in his pocket, five pesos in stamps and a certificate that declared him “legally blind.” “What revolutionary organizations do you belong to?” asked the clerk filling out his form.
The activist still shows indignation when he remembers the scene. “I told her I did not belong to any and from there everything changed,” he explains to 14ymedio. The official informed him that his case had to be referred to the Ministry of Justice to verify if he belonged to any “human rights” group.
Two weeks later they told him that he could not be a member of Anci because the statutes do not allow the disaffected in its ranks. After several attempts and appeals to different entities claiming his right to membership, Goberna has only had silence for answer.
Last year luck smiled on him. During a trip to Peru, organized by the Institute for Political Freedom (IPL), the idea arose, along with other activists, to create an independent entity to “visualize the difficulties faced by people with disabilities and promote a change of thinking towards them.” The organization does not discriminate against anyone because of “their physical, sensorial, intellectual, cultural or ideological characteristics.”
Today, the network has 15 active members and has managed to have representation in several provinces. In September of last year, some of these pioneers attended the VIII International Congress of Persons with Disabilities, held in Medellín, to learn about the work developed in different countries of the region.
The Network collects testimonies from people who are in a precarious situation and are victims of institutional or family neglect and has also identified at least six cases of violation of the right to join Anci, Aclifim or Ansoc for ideological reasons.
Last Saturday, during their last meeting, the members of the independent group proposed to disseminate the Convention on the Rights of Persons with Disabilities, to which Cuba is a signatory and whose content is scarcely known on the island. In addition, they want to disseminate updated concepts about disability, accessibility and inclusive culture, among others.
For Susana Más, an independent journalist and member of the Network, “it is unacceptable that people working in the media, intellectuals and artists who are supposed to be up to date in the use of language, work outside these concepts.” The reporter opts for a “sensitization campaign” around the term “person with disability, instead of disabled.”
Relative to the NGOs set up by the government, The Inclusive Culture Network does not consider itself an opposition organization or an enemy entity. “What we would most like to do is to cooperate with these entities, not in the spirit of disqualification or competition, but as something complementary,” insists Goberna.
For the moment, the Network is dedicated to highlighting attitudes and denouncing the existence of architectural barriers, so that those with a disability are not seen as sick, and for those around them to shed their discriminatory prejudices, indifference or pity.
The biggest difficulty they have encountered so far is the negative attitude of the institutions they go to in search of information or to file complaints: the first thing they are always asked is whether they are authorized or if they belong to an official entity.