Access to health information is a human right: why are so many Deaf people missing out?

Access to healthcare and health information is a basic human right, yet Deaf individuals are consistently denied access to it.

On 15 and 16 May, Ms Catalina Devandas Aguilar, the United Nations Special Rapporteur (SR) on the Rights of Persons with Disabilities hosted an expert group meeting in Geneva, Switzerland. The meeting focused on the rights of persons with disabilities to the highest attainable standard of physical and mental health. Special Rapporteur Augilar invited the World Federation of the Deaf (WFD) to attend this meeting.  Dr Peter C. Hauser from the National Technical Institute of the Deaf (NTID) at Rochester Institute of Technology was selected by Mr Colin Allen, WFD President, to be the expert to present on behalf of the WFD.

Hauser discussed the status of Deaf individuals’ health and access to healthcare and health information, which the SR will use to create a report to be presented to the 73rd UN General Assembly that will occur in New York in September.

“Research has shown that deaf individuals are up to seven times more likely to experience cardiovascular disease, high blood pressure, diabetes, and stroke,” Hauser said. “This is because there is a significant health disparity and knowledge gaps in preventive health.”

This disparity is partially due to the lower standards or lack of deaf education, loss of incidental learning opportunities, and isolation. The process to ensuring access to health information starts at birth, he explained, and Deaf health is directly related to Article 24 of the Committee on the Rights of Persons with Disabilities (CRPD) that focuses on education.

“If deaf infants and toddlers are not provided their right to access to language early in life, then the language deprivation will effect their education,” he said. “This includes health education, which directly effects their health knowledge and literacy. States parties must take appropriate measures to facilitate the learning of sign language and the promotion of the linguistic identity of the deaf community.”

Both Hauser and the other experts in the meeting could point to several examples of the lack of access to health information and healthcare for deaf individuals. Severe human rights violations have occurred where deaf individuals have been hospitalised without interpreters.

“There have been cases where medical treatment is provided without informed consent because of the lack of communication access,” Hauser said. “This is a human rights violation, as stated in CRPD Articles 14 and 17. There is a great need for more qualified sign language interpreters with training in healthcare interpreting.”

Hauser stressed that not only deaf patients require access at healthcare settings, but deaf parents and family members as well. He highlighted to several cases where deaf individuals had been denied access to interacting with medical professions who are treating their immediate family members.

“Health information needs to be accessible to deaf individuals around the world in their natural sign languages,” he said. “Universities need to provide training for healthcare providers to include information on how to work with deaf individuals. Additionally, there is a need for healthcare providers fluent in sign languages to work directly with deaf individuals, especially in the mental health field.”

Deaf individuals’ mental health needs are currently not met and are sometimes worsened by receiving psychiatric services where they do not have access to communication. Sometimes, Hauser explained, deaf individuals get locked up without any idea why, and this only exacerbates the issue. 

Hauser closed with the recommendation for more opportunities for Deaf individuals to obtain training in health care professions themselves.

 “The CRPD states that deaf individuals have the right, as any other individual, to access healthcare and health information,” he said. “These rights are currently not being met, and state parties need to take appropriate measures to ensure the human rights of deaf people in their countries.”

Dr Hauser is a deaf clinical neuropsychologist and the director of the NTID Center on Cognition and Language (NCCL) where his team conducts research on cognitive, linguistic, and socio-cultural factors to advance learning, well-being, and health. NCCL currently has research projects on how deaf individuals learn health information, deaf women’s pregnancy and childbirth experiences, deaf children’s bilingual education and the importance of language for cognitive development.

More information on CRPD can be found here.

More information about the Special Rapporteur and her work can be found here.

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