Deafblind People in Spain: The Unseen Community Without a Census
- Vivian Pavón
- Apr 1
- 2 min read
For my Master's Thesis, my classmates and I conducted research on the lack of official data and the urgency of recognizing this group.
In Spain, the public administration is unaware of how many people live with deafblindness. In 2020, while studying a master's degree in Investigative Journalism, Data, and Visualization, my classmates and I learned the story of Fili, a deafblind boy who was experiencing enormous accessibility challenges. This reality motivated our Master's Thesis, in which we set out to investigate the lack of an official census and the situation of this group in the country. Our objective: to shed light on a structural problem that affects the rights and quality of life of thousands of people.
Our work began with an alarming finding: the Ministry of Health had commissioned a study on the deafblind population in 2011, but it was never published. Furthermore, the methodology used was inadequate, exacerbating the lack of reliable information on this group. Meanwhile, the situation of deafblind people remained precarious due to government neglect, despite Law 27/2007 already mentioning the need to recognize and address their needs. This situation worsened further during the pandemic.
METHODOLOGY, RESEARCH FROM THE GROUND UP:
To address this issue, we collected information from various sources:
Human sources: We interviewed 65 deafblind people and their families, politicians, national and international experts, and representatives of organizations involved in disability issues.
Documentary sources: We analyzed IMSERSO databases, grant records, Senate and BOE documents, as well as reports from specialized associations.
Surveys: To test for general ignorance, we conducted a survey with a sample of 450 people.
TELLING STORIES TO RAISE AWARENESS
Our research focused not only on data collection but also on creating resources to raise awareness about the issue:
Graphic identity: We designed a logo and an accessible color palette for our publications.
Data visualizations: We develop graphics and visual elements to facilitate understanding of the problem.
Personal Stories: We document representative cases that showcase the diversity of experiences within the deafblind community.
"Aislados" Podcast: We explore how the COVID-19 pandemic affected this group and delve into their daily struggle for inclusion. Aislados means isolated.
Podcast: Aislados, a pandemic and a disability
Our research revealed that the lack of an official census on deafblindness in Spain is a structural problem that renders thousands of people invisible. Without data, there are no effective public policies. Through research, we were able to obtain the study that had been shelved for almost nine years. We believe that making this situation visible is the first step toward change, and we hope this work will contribute to opening the debate and promoting concrete actions.
