One of the new elected members of the World Federation of the Deafblind (WFDB), Irene McMinn, was interviewed during the WFDB General Assembly and the Helen Keller World Conference (HKWC), in Benidorm, 19-27 June 2018. The events were hosted and co-organised by FASOCIDE – Federación de Asociaciones de Personas Sordociegas de España (Spanish Federation of Associations of Deafblind People) and WFDB, with technical support from IDA. The events were made possible by financial support from Ministry of Foreign Affairs of Norway, UK AID, and Fundación ONCE.
Irene McMinn, told to us:
“I come from Sidney, Australia, and I was born with cerebral palsy, which caused my blindness. As a child, I spent a very long time in hospitals. Since then, my health improved a lot, but I was 5 and a half years in a wheelchair.
One of the main problems for people with deafblindness that access to the health system, is that there is a lack of interpreters. Without interpreters-guides, we cannot communicate with anybody, and the doctors don’t tell us what’s happening with our health.
In one case, one person was not given food for three days because the persons that were working in the hospitals did not tell him how to ask for food. Only after three days, the nurse understood that the person was really hungry. When this person came back home from the hospital, he did not know if there was a diagnosis and what it said. That person was put in a nursing home and died of loneliness because nobody could communicate with him.
That’s a huge problem that people working in the hospitals do not understand persons with deafblindness.
I am the president of the Deafblind Association of New South Wales, and I have just been elected board member of the WFDB.
In order to achieve an inclusive health system for persons with deafblindness, we need members of our organisations to go into the system and teach to the people who work there of the importance of communicating with persons with deafblindness. We need to explain to them what is really needed to support persons with deafblindness, and it should be done through a long-term close collaboration.
We need to go to speak in the universities that are forming the future nurses and doctors so that they have a basic knowledge of how they can support us. Our members also have to go to hospitals and talk to the staff, about including them in the discussion.
I have got a sister doctor, and she always tries to talk to people about deafblindness and the fact that the deafblindness doesn’t stop people to do things, they just need their rights to support their actions.
I do think that the report will be really important to speak with governments and make them redesign their health system, this is what we want to see happening soon in the future.”