‘Su guagua no escucha nada’: Ecuadorian families confronting the deafness of a child

Abstract

In accordance with the social model of disability, this study proceeded from the assumption that parents’ experiences of a child’s hearing impairment reflect the circumstances of their lives rather than anything innate in the impairment itself. Few studies have explored the influence both of culture and social structure and of families’ economic and social resources. We studied families’ experiences of the diagnosis of hearing loss in Ecuador, a multicultural country in which family ties are strong but where pronounced social and economic inequalities persist and where many people have no access to health care. The study shows how inequality – and in particular the experience of poverty – shapes families’ experiences of acquiring a diagnosis and of trying to accommodate a child with special needs.

Keywords:

• Ecuador
• families
• inequality
• poverty
• hearing impairment

Acknowledgements

The authors thank Ruth Andrade, Angel Quizphi, Joanna Maji and Beatriz Miranda for advice and help; and above all the parents and grandparents who shared their experiences with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. One respondent, recalling her grandson’s diagnosis 11 years earlier, said ‘I took him to the doctor. Back then doctors paid almost no attention to children with disabilities, so he was simply another deaf child, another deaf child who came to the doctor and that was it’.

2. See http://www.discapacidadonline.com/mision-manuela-espejo-ayuda-personas-discapacidad.html

3. Until 2014, the Instituto de Invidentes y Sordos del Azuay.

4. Ecuadorian Sign Language (LSE) was used in the two interviews at which one or more interviewees were deaf, with questions and answers voiced for transcription.

5. Centro de Protección para Discapacidades, which provides services for people with disabilities. Now part of the Ministry of Economic and Social Inclusion.

6. Instituto del Niño y la Familia, later changed to Instituto de la Niñez y la Familia and attached to the Ministry of Economic and Social Inclusion.

Additional information

Funding

The authors thank the Secretaria de Educación Superior, Ciencia, Tecnología e Innovación for a Prometeo award to Blume, and the Research Office of the University of Cuenca (Dirección de Investigación de la Universidad de Cuenca) for financial support.