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In South Africa, up to 80% of consultations in health care are carried out across language barriers. As a result, many people who do not speak the dominant language English, are denied equal access or receive compromised access to health care services. Scholars have argued that language was the missing link in achieving the MDGs in Sub-Saharan Africa, where 60–80% of the populations do not know the former colonial languages. This NPO was inspired by our friend and colleague Marion Heap, who died unexpectedly in August last year
Language barriers, coupled with the human rights challenges faced by people with disability have formed the focus of Marion Heap’s work since 2004, when she began working with signing Deaf people and colleagues in Public Health to address these barriers. A chance reading of an Oliver Sacks book led her to archives exploring the history of Deaf people in Cape Town. What started as an interest became an ethnographic PhD attained in 2003. Along the way, she witnessed the formidable day-to-day language barriers preventing signing Deaf people from effectively accessing the public domain. At the end of her PhD, she found it impossible to walk away and do nothing about these obstacles.
In 2004 she secured an NRF post-doctoral fellowship in the School of Public Health and Family Medicine for research addressing these barriers in health care. She knew she had to work closely with the community affect, and so immediately recruited two Deaf staff members who have remained part of the team from the start. The hallmark of Dr Heap’s work has been a commitment to giving the Deaf the agency to which all disabled people are entitled, as explicitly articulated in the wider disability movement.
2008, with funding from the MRC, she launched a study to pilot the first ever free-to-patient medical sign language interpreter service. What started as a research project developed into a service, which raised, ethical questions related to setting up expectations that could not be meet in the long term. However, by 2017, just under 10 years later, and after additional research generating the evidence was presented to a range of key stakeholders, the Western Cape Department of Health took responsibility for sign language medical interpreting services in health care, which are now accessible to all signing Deaf patients. This is a significant breakthrough, being a first in the history of the country and probably for the continent of Africa and one UCT can be proud of.
From the start she worked closely with two NGO’s, The Deaf Community of Cape Town (DCCT), and DeafSA Western Cape, involving them in planning and implementation. Her ethnographic research gave her a solid network of contacts with ordinary Deaf people, further developed over the next 20 years, which enabled her to conduct research in a mutually respectful framework.
Besides her research leading to establishment of access to SASL interpretation, her work has included:
Marion was a longstanding member of the School of Public Health and Family Medicine at the University of Cape Town, who also worked and studied in other parts of UCT over a number of years. She was well known in the Faculty and across Cape Town for her research and advocacy around the right to health for individuals with disabilities, in particular regarding issues of language and the rights of the Deaf to South African Sign Language interpretation when accessing health care. With others in the School, she argued for greater attention to the deaf community in public health services, introduced innovations through different interventions in this area, and spearheaded sign language training in the Faculty.
Marion devoted her latter academic life to research and advocacy for the rights of the deaf to South African Sign Language interpretation and, after years of hard work raising sequential research grants, decided the best option was to set up an NPO to carry on the work. The NPO called = Equal Health and was founded in 2019.
Partly as a result of Marion’s pioneering work, the Western Cape Health Department’s contracted language provider is now including SASL in the services it can be called on to deliver to assist patients in need of interpretation.
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