Individuals with hearing and speech impairments face several challenges to access decent health care in the National Health System (NHS). Among several problems, we must highlight the existing barriers in the communicative process between these individuals and health professionals. In other words, deaf-mute patients are not correctly diagnosed and, consequently, they receive wrong prescriptions, running the risk of acquiring other pathologies.
Taking into account this situation, the social activist and human rights defender Nilza Massitela advocates for the urgent training of health providers in sign language so that they are able to communicate with people with deaf-mute patients.
Massitela, in the scope of her activism work, she had faced a situation involving a deaf lady, who had been attended by a nurse with no knowledge in sign language. The provider did not communicate even the basics in sign language.
“What caught my attention was that as she was leaving the room, she was crestfallen. I approached her and observed her dissatisfaction towards the care she had received from the nurse who had been unable to understand her concern. I don’t have much knowledge of sign language but I do have some basics. I offered myself to go back to the office and, with my help the, lady was able to explain to the nurse what she had, in this case a urinary tract infection”, she explained.
Comparing the prescriptions, the activist noted that the first one was wrong because it was incompatible with the patient’s problem.
Therefore, the activist reiterates that the lack of knowledge about sign language, in health units, makes health services not inclusive, “so it is important that there is inclusion, taking as an example the case of the lady who almost left with an incomplete (and wrong) medication because there were problems in the communicative process.”
“The perception was not complete”, she stressed, adding that “I noticed that there was a lack of inclusiveness in health facilities, with limitations for patients with speech, hearing and vision impairments.”
“For me, it was bad to detect this lack of inclusiveness in health facilities and once again I played my role as an activist. We are all invited to be united, to support others in need. Activism is this, giving yourself to another person, not witnessing an accident, or a situation of lack of information. I can’t see a situation and not be able to intervene”, she said.
On the other hand, she highlights the fact that the nurse accepted her support, allowing them to collaborate together in the correct diagnosis of the patient. Using this situation, she invited health providers, in particular the health system in general, to reflect on inclusion, taking into account all types of disabilities.
Weaknesses in the National Health System Persist
Massitela was open for activism she was 7 years old. However, she started practicing it in secondary school, when she was 14 years old, and started to get involved in several social activities at school, never having stopped dedicating herself to the social cause.
The various weaknesses that the National Health System presents in the provision of decent services are a motivational factor for Massitela to dedicate herself to activism, worrying about the lack of a humanized service to users, as well as the non-compliance with the measures contained in the Charter of Rights and Duties of the Patient (CDDD).
According to the source, there are few activists who deal with sign language. It is a big challenge to be an activist because “activists are seen as individuals who police, bring problems and barriers to the work of others. But being an activist is about giving of yourself to others without looking at monetary return.”
Another challenge she pointed out has to do with the limitations they face when it comes to publicizing campaigns, as activists are not seen as influencers of policies or norms that bring about changes and improvements in society.
“The lack of humanization is so serious that today we look at health services without confidence, even worse because the dissemination of the Charter of Rights and Duties of the Patient is very scarce [it is not disseminated]”, she said.
On the other hand, she said that during her work as a health activist, she had the opportunity to mobilize and raise awareness among the communities on various issues, as well as among health providers themselves.
“I found that people are very interested in understanding issues related to law and regulations, but they don’t have access to them. So, I did the community mobilization work and also capacitated community leaders, focal points in the villages for information dissemination. I also trained the health providers themselves”, she said.
The community health workers raised several challenges regarding humanization, with most of them complaining about the way nurses treat them, as well as the misleading explanations about how to take the medication.
Community Engagement
For the social activist, her work contributes to communities having the courage to fight for their purposes and rights with regard to access to health services.
“The health authorities are already open space for these communities to contribute, through the creation of the co-management and humanization committees. This, for me, impacts because I feel that the community, the provider and the system are connected, there is a very quick response. It is not enough just to disseminate the rights, it is important that the community itself is aware of such rights, so that it can exercise its citizenship without any barrier and without fear of any reprisal”, she stressed.
In Nilza’s opinion, engagement is the fruit of a collaboration between the community, providers and the health system. She believes that when these members are connected, much is discussed together and overcome.
To this end, she says it is necessary to strive for the community to take ownership of the health system, as well as the health services, to know that it has a voice, and that it can support in some activities in the health facilities.
“The communities, in certain areas, are responsible for building toilets and providing water. I want to believe that if they collaborate it is because they have explanations about how things work. If we don’t take ownership of the problems, we will simply say that it’s their problem”, he said.
Nilza Massitela is currently a social activist for health at Saber Nascer, a movement whose main objective is to eradicate violence against women in maternity hospitals.