By Anelitha Tukela with Tim Hart
The importance of equal access to healthcare cannot be overstated. However, despite significant progress in addressing accessibility issues, those with disabilities continue to face numerous challenges when accessing healthcare. In the early months of the COVID-19 pandemic, numerous scholars and activists in South Africa noted that the pandemic had exposed the plight of people with disabilities in accessing healthcare. The story of Mandy (not her real name) sheds light on the struggles experienced by people with physical disabilities when accessing healthcare, especially those living in rural areas.
Mandy is a 60-year-old woman living in a rural area of the Eastern Cape. Her right leg was amputated in 2021 due to her diabetes being unstable. Mandy was diagnosed with diabetes some years before the COVID-19 pandemic. She takes medication, and, since being diagnosed as having unstable diabetes a couple of years before the COVID-19 pandemic, she also injects herself with insulin.
After her leg was amputated in 2021, she had to stop working and stay at home. Some months after the operation, she obtained a disability grant from the Department of Social Development. “I think I qualified under [the] disability grant. It is better now that I am getting a grant. I have money to maintain my household, but the only frustration is that I’m using a wheelchair and can’t move around like I used to,” she says. Mandy’s life changed drastically during COVID-19 with the loss of her leg. For example, she now needs assistance moving around her house since it has stairs.
Mandy feels she would be better served if she had a prosthetic leg, which would give her greater mobility and independence in and outside her home. She has applied for a prosthetic limb, but the process has been long and frustrating. She has struggled to access the medical facilities and services that are required in order to be eligible for a prosthesis. For example, she is supposed to attend weekly physiotherapy sessions at a hospital in East London, 40 kilometres from her home. Immediately after the operation, Mandy undertook physiotherapy and learned how to use her wheelchair and walking frame. But she has been unable to keep up with the physiotherapy sessions due to logistical challenges and the expense. Travelling to the hospital every week, she needed to hire a car so that she could take her wheelchair and walker with her. “I don’t have money to hire a car every week, and without me going to physiotherapy every week, I can't qualify for a prosthetic leg,” she says.
Having become frustrated with the process, Mandy is now thinking of a prosthesis privately, although this is expensive, and she cannot afford it. In addition, she would still require physiotherapy and assistance.
Meanwhile, Mandy also struggles to collect her diabetes medicine at every month from the nearest rural clinic because she can’t get there herself. There was an Extended Public Works Programme (EPWP) in her village, and her neighbour who was part of the programme used to collect Mandy’s medicine, but the neighbour’s contract with EPWP has ended and she no longer collects the medicine on Mandy’s behalf. So now, Mandy needs to find someone else to collect her medicine. Sometimes, her husband, who is working, takes a day off to go and collect his wife’s medicine. However, her husband cannot always take a day off and she cannot find anyone else to collect her medicine. At these times, she will go days without her medication, drinking water instead of her medicine in an effort to off-set any ill effects. However, her diabetes is unstable and can seriously impact her health.
In addition, since Mandy cannot collect her medicine herself, she may also miss scheduled medical check-ups. She explains: “The nurses never write on the clinic card or tell the person collecting the medicines my check-up date.”
After I got to know Mandy while I was undertaking fieldwork in Eastern Cape, and learned about the challenges she was facing, I put her in touch with a health assistance mentor at a non-profit organisation which helps vulnerable children in nearby informal settlements, farming communities, and rural villages. He agreed to help collect her medicine until she was able to source proper assistance from the Department of Health.
Mandy’s story shows that although people living in rural areas might have “equal” access to medical facilities to that provided to those in suburbs or townships, the terms of such access are not equitable, particularly for those living with a disability. Mandy lives far from the hospital where she needs to go for the physiotherapy that is required in order for her to use her assistive devices properly, and be placed on the list for a prosthetic limb. Mandy also struggles to access the medicine she needs. The concept of equality is based on the idea that all people should be able to access the same resources and opportunities, resulting in similar outcomes. The idea of equity, by contrast, recognises that the circumstances of each individual are different and that they may need to be allocated specific resources in order to achieve parity of outcomes. Essentially equality is about quantity and sameness, while equity is about fairness and justice.
South Africa’s public healthcare system does not cater to people who cannot access facilities because of a lack of transport, insufficient money, or limited mobility, as in Mandy’s case. The disability grant of R2,080 per month does not cover her accessibility costs, meaning that she has been unable to undergo the weekly physiotherapy that is required by the local state hospital if she is to be placed on the list for a prosthetic limb. The kind of lack of access experienced by Mandy is more pronounced in rural areas. Hospitals are far from homes; and transport, public or otherwise, is less available and more costly. Public transport providers seldom cater adequately to people with disabilities, and more expensive private provision or the support of resource-stretched local non-profit organisations is required.
One option would be for the health services to arrange house visits for the people like Mandy who struggle to get to hospitals and clinics for the required healthcare treatment and medication. Another option would be to provide regular state-funded (monthly or weekly) transport for people who need to go to the hospital for specialised treatment. If either of these interventions existed, Mandy could have received a prosthetic leg by now, and she would be taking her medicine regularly, preventing any further diabetes-related problems.
Equal access to healthcare is a fundamental right that should be available to all individuals regardless of their disability. In this regard, the adoption of practices to promote equity would ensure that public sector healthcare is inclusive and meets the health needs of people with disabilities, chronic illnesses, and dreaded diseases living in rural areas and requiring specialised treatment that local clinics cannot offer at present or which are only needed by a few people in each village. Simple equality is not enough for rural people in similar circumstances to Mandy. Equity is required.
The Heart of Gender Justice in New Mexico: Intersectionality, Economic Security, and Health Equity - Scientific Figure on ResearchGate. Available from: https://www.researchgate.net/figure/Layers-of-Intersectionality-Diagram_fig5_317499725
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