Access to health is especially challenging for persons with deafblindness. To advance health equity for deafblind people, there is a need for models of care which are inclusive and people-centred, and consider the provision of care from the user perspective. In this article, a person who is deafblind describes his experience with health care and the “invisibility” that the community face.
When Frank Trigueros visits a hospital, he braces himself for possible problems. It is not the medical care that concerns him as much the communication, as a person who is deafblind.
“I cannot communicate. Normally I use interpreters to communicate directly with physicians. I cannot get around easily myself, so the interpreter guides me around to where the services are,” explained Trigueros, who was born deaf and later lost his sight.
In theory, communication is possible using a laptop with a braille keyboard, but this is time-consuming, he said. Health professionals usually want to work quickly, as do government officials, and even in conversations with his interpreters, they can be impatient.
“I have to ask them to slow down. I have been told: ‘I don’t have time to assist you’,” said Trigueros, speaking through an interpreter using a tactile sign language. “It makes my day when there’s no problem. But generally speaking, it can get messy.”
On one occasion in hospital, a doctor did not take the time to explain what drugs he needed to take and when. “He just walked away backwards. I was mad. I had to find someone else to help me,” said Trigueros, who is president of European Deafblind and FASOCIDE, the Federation of Associations of Deafblind people in Spain.
Impact of the COVID-19 pandemic
All too often, the reality is that the health system and government simply overlook the deafblind community. A case in point is the COVID-19 pandemic, when restrictions on movement failed to consider the needs of the deafblind community. Forced isolation was a devastating setback to their independence, given their need for interpreters to communicate and move around the community. As they communicate through hand-over-hand signing, physical distancing effectively cut off communication.
“We faced opposition to get interpreters. There was no understanding from health services or the public sector,” he said.
“Interpreters were not even allowed in the emergency room [due to COVID-19 restrictions], even though we tried to explain we need them. Again and again and again, we had to explain who they are and why we need them.”
Some doctors were empathetic, but the community cannot rely on “people’s good will” he said, adding it was “nerve-wracking” not to have the security of being able to communicate.
“The need for interpreters was not thought of in the Covid-19 protocol. We should have been contemplated in the rules to begin with.” Deafblind organizations had to protest that they had been “forgotten”, as they have done on many other occasions previously.
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Frank at a conference, communicating with an interpreter using hand-over-hand signing. Picture courtesy of Frank.
The system “does not care enough”
Frank said that one example of how the community gets forgotten is the government’s health card – it does not state that a person is deafblind, although the card states other disabilities on it . Because his disability is not recorded in the system, Trigueros sometimes gets calls from health centres.
“I’ve tried many, many times to tell them. I'm asking for a line on a card that would save me a lot of trouble. I don't think it's much to ask,” he said, adding that he was told that the software to produce the card did not allow for it.
“It shouldn’t be that difficult to put right. It is not an issue of money. The system just does not care enough.”
He said people who are deafblind were also not properly informed about COVID-19 restrictions or the virus during the pandemic. “We had to do their work of [the government of] informing [deafblind] people. I know of many who live alone and didn’t know about the virus,” he said, adding that the capacity of the non-profit organization he worked in was limited.
Aside from the invisibility of the community and the lack of understanding, another issue is funding for interpreters for deafblind people, which is limited and uneven across the country, although funding is available for people with other disabilities. “We need funding to move around. We need to have agency in our lives,” said Trigueros.
He added that he was “lucky” because he had a family. “There are [deafblind] people who do not have family, who do not have a support system. Imagine the lives of those who are live alone…,” he said. Some of them, he said, were in need of therapy. However, it was difficult to find a suitable professional with the knowledge needed to help them.
A version of this story first appeared in the WHO Global report on health equity for persons with disabilities.