Deafblindness and inclusion – an interview with Carlos, Mriam and José Darío

By Denise Nanni and Milena Rampoldi, ProMosaik. In the following an important interview realised by (Carlos Jorge), Brazilian, from ABRASC (Associação Brasileira de Surdocegos), Miriam Torres of Orves (Organización Venezolana De Sordociegos en Venezuela) and José Darío Rendón Nieblas from Mexico. We talked about deafblind people. We have already interviewed Alex Garcia from Brazil about what deafblindness means, and how it restricts life. Alex showed us his struggle to be part of society. Here you can find his interview and his poem about the dreams he has as deafblind person. ProMosaik is for a complete inclusion of people with disabilities. Would like to thank Carlos for his impulses and photos.

What kind of problems do people with deafblindness face nowadays?
a) Misinformation or lack of information – most people don’t know what deafblindness is. They usually expect someone who can’t hear and can’t see absolutely nothing and they want a “recipy” of how to communicate. However, deafblindness involve different ways of communication and different necessities.
b) There are specific laws for people with disabilities, but many important aspects aren’t accomplished. Sometimes, they are not even respected.
c) People with deafblindness need guide-interpreters. The government and/or government-owned private corporations could an should provide these professionals, but not always it happens. 
In São Paulo, we have the CIL (Brazilian Sign Language Interpreters Central) that provides guide interpreters only for public services, but it’s not enough. We always need volunteers, and the same happens in Venezuela and Mexico. Considering that we are all facing serious challenges related to economy and politics, it makes it much more difficult for us to find volunteers. So, the governments and companies should take the responsibility to provide guide-interpreters to guarantee good communication (oral, tactile, or any other ways of communication).
d) The issue related to the lack of professionals who work as guide-interpreters is much more serious when we think about students. And there is also the problem related to the distance: schools that can give a good support usually are far from the houses of the students with deafblindness.
e) The assistive technology and apps or other supports are usually very expensive. 
What are the main obstacles to the social inclusion of people with deafblindness?
a) Lack of accessibility, not only environmental, but also and especially attitudinal.  
b) No solutions for the problems listed above.
c) Lack of information and ignorance, and as a consequence, lack of interest to provide guide-interpreters.  
d) Not considering the people with deafblindness in the census. 
e) Lack of resources to empower families to give the necessary support to the family member with deafblindness at school, at the university, at rehab institutions, or even to give formation to the people in general. It is usually done by Social Organizations or Associations, like ORVES (Organizacion Venezolanda de Sordociegos) in Venezuela and ABRASC (Associação Brasileira de Surdocegos) in Brazil.
f) The laws aren’t followed as they should. They should be part of our everyday life and not only on the paper.
I read on your site that you cooperate with international organizations such as WHO and ONU. What is your role at the international level and what is being done, in order to support the advocacy?
Personally I cooperate with WFDB (World Federation of the Deafblind) – www.wfdb.euHere you can find the homepage of the organization supporting deafblind poeple all over the world.
Do you cooperate with other public institutions? (local authorities, governments..)
About the problems faced by people with deafblindness
In Venezuela, Orves cooperates and works with public institutions. 
In Mexico, when they are invited. 
I don’t work directly with public institutions, but as the General Director of ABRASC, with a partnership with Grupo Brasil, we are all involved in questions related to education, health, culture, accessibility, technology, and many other issues. The campaigns and our actions aim to provide information and to make the community aware of the necessities of people with deafblindness. So we are always giving lectures, we also participate in Congresses and other public activities.