Deaf Ecuadorans stand up for their civil rights

From IPS:

QUITO, Equador -- Ximena Carrera discovered a new world at the university. After years of experts who had ruled out the use of hearing aids, she finally tried them -- and her life completely changed. That is what she now hopes will happen for many more hearing-impaired Ecuadoreans.

The goal of the foundation D.H.Ex-Ecuador is for those with hearing problems "to live their deafness," which for Carrera means "enjoying the silence, acting with autonomy and building our identity as deaf people."

It also means "recognising that deafness is invisible and knocking down the communication barriers in daily life," and especially, "accepting our essence as different human beings who are equal in dignity and rights," she told IPS.

In Ecuador, a country of 14.8 million people, 20 percent have some degree of hearing impairment and 216,000 are nearly completely deaf and rely on sign language to communicate, according to the government's National Commission for Disabilities (CONADIS).

Psychologist and educator Rocío Cabezas, with 29 years of experience teaching the deaf, explained that signing is a system that meets all the requirements of a language, but the hand gestures and facial expressions can vary in each country.

Cabezas said those who use "the visual-gestural language should be considered a linguistic minority," which in Ecuador would require the government to provide interpreters for public services, including medical and legal. "If someone comes in who speaks Quichua or English, they look for an interpreter, but not when it's a deaf person," she said.

The expert is one of the pillars of the National Institute of Hearing and Language (INAL), a pioneering government institution in education for the hearing impaired. With 42 years in operation and 12 graduating classes, it currently has about 200 students.

At INAL, where all classes are taught using sign language, the goal is for the graduating students to be completely bilingual in written Spanish and visual- gestural communication. For the 20 percent of students who have some hearing ability, the institute also provides speech therapy, outside the academic curriculum.

Daniela Montalvo and sisters Diana and Pepa Gaona, three D.H.Ex university students with hearing aids, provide a sample of the different origins of deafness -- and the common barriers they face in achieving their goals.

Montalvo was born with auditory deficiency resulting from perinatal asphyxia, while the Gaona sisters lost almost all hearing at ages two and eight from genetic causes.

"The processes and results are very different depending on the age when hearing loss occurs," said Carrera. The three young women admitted that they do run into communication problems, although they had received speech therapy since childhood, and with great effort developed the ability to speak as well as people with full hearing capability.

"Often, the causes of deafness are preventable," said Carrera, who champions early screening for hearing impairment. The World Health Organisation believes that half of the cases of relative or profound deafness affecting some 300 million people worldwide were preventable.

Francisco Plaza, president of the Medical Foundation Against Noise, Environmental Contaminants and Smoking, noted that constant exposure to high noise levels in Ecuador contributes to a higher incidence of hearing problems.

"Seemingly harmless situations, like listening to music using headphones, or the sound of car horns or the noise from their engines, for people over age 30 are causing a higher incidence of presbycusis, which is hearing deterioration normally associated with ageing," said Plaza.

According to CONADIS, 30 percent of elderly Ecuadoreans suffer hearing problems, which are worsened by environmental causes, infections, and the inappropriate use of medications.

In Quito, a 2004 municipal ordinance regulates the sound levels from loudspeakers, factories, sawmills and other mobile or stationary sources of noise. Music issuing from speakers in the doorways of retail shops "surpasses 100 decibels," physician Carlos Jaramillo, a former metropolitan Health Director, told IPS.

Increasing the public's awareness is another of the D.H.Ex goals. In 2004 it began an exchange programme for hearing-impaired students from Ecuador and the United States, and currently coordinates many cultural activities, as well as a service centre for deaf persons and their families.

Montalvo and the Gaona sisters agree that the role their parents played was essential to helping them integrate into the hearing world and for access to the same opportunities, "although discrimination is a constant factor," said Diana Gaona.

Carrera, 55, who the independent U.S.-based organisation Ashoka has recognised as an international social entrepreneur for her initiatives, told IPS "they are examples we want to spread to many more people."

To that end, "we provide specific information to the families about their role in achieving the integral development of their deaf children," she said, underscoring that "nearly equally important is their emotional support."

"Personas sordas sí, mudas no" (Deaf Yes, Mute No) is a video that the foundation has broadcast on Ecuadorean public television and on regional channels to raise public awareness about the issues associated with deafness and hearing impairment.

The video is also available on the Internet site YouTube, where thousands have watched it. And it is used in workshops in schools -- for students, teachers and parents -- for fighting discrimination.

"When we ask someone to repeat something, people often lose patience. They seem to think that because we are deaf, we must be stupid," said Montalvo.

D.H.Ex's latest campaign is to add subtitles to television broadcasts, after the government of leftist President Rafael Correa began to use sign language interpreters in his speeches and on some news programmes. "But they appear tiny on the screen and are almost impossible to see," said Pepa Gaona.

Following a workshop with executives from the mobile phone giant Movistar, the group obtained a differentiated cell phone rate for deaf people, and plans to approach the other mobile phone service providers.

"We managed to get 1,500 text messages for three dollars. That is a big help to us," said Pepa Gaona. She studies gastronomy and her sister studies interior design at a private university that is open to the deaf -- thanks to a scholarship from CONADIS.

In addition to the social challenges, the economic costs of deafness are another problem. "The price of good hearing aids is at least 1,200 dollars. But it's not just a matter of obtaining them. There is the added cost of constantly needing to buy batteries, which run out quickly," said Diana Gaona.

Since 2008, the government has been financing cochlear implant operations for deaf children who meet the basic requirements. The procedure places a tiny receiver and electrodes inside the ear, which sends impulses to the auditory nerve system.

The operation costs about 30,000 dollars. So far, 120 have been completed of the 250 operations the Health Ministry has planned.

The initiative is practically unprecedented in Latin America and has won praise from Cabezas and Carrera, though the latter insists that the focus should be comprehensive, "because the implant provides sounds, but not language."

"I give good marks to the government for the medical part, but bad marks for the social part," Carrera said.