Vulnerable but overlooked: The Covid-19 vaccine plight of people with disabilities in South Africa

Dr Tim Hart is a chief research specialist in the HSRC’s Developmental Capable and Ethical State (DCES) research division and a research fellow at Stellenbosch University in the Department of Sociology and Social Anthropology He has a profound and progressive hearing impairment.

Prof Narnia Bohler-Muller is Divisional Executive in the DCES research division at the HSRC and adjunct Professor of Law, University of Fort Hare.

Ms Therina Wentzel is the National Director of the National Council of and for Persons with Disabilities.

The topic of coronavirus vaccines is dominating almost every conversation at the moment. Anti-vaxxers and Covid-19 denialists have been disputing basic vaccine science, disseminating damaging fake information on social media platforms. Others, among them healthy older people who qualify for immediate access, are postponing vaccination to “wait and see”, stating they are “undecided”. 

Those living with disabilities and serious underlying conditions do not have such luxury of choice, and for many it is much more of a life-and-death matter.

Since April this year, people over 60 in South Africa have been permitted to register for Covid-19 vaccinations, and yet, only half of the estimated number of senior citizens have registered, and fewer have received the vaccine. 

From 1 July, those over 50 have also been invited and earlier this month, the government approved the vaccination roll-out to be extended to journalists next, while higher education minister Blade Nzimande announced that the vaccination of university staff might also start soon. 

But what of that most marginalised sector of the global population and our country — people with disabilities?

At least 12% and possibly as much as 20% of South Africa’s population experience activity limitations. Limitations include a spectrum of disabilities, such as complete or partial immobility, restricted communication, sensory deprivation, and psychosocial and neurological complications. 

Some people have more than one impairment, increasing their inability to function optimally in society or even attend to their own basic needs. Many people with disabilities have weak immune systems and comorbidities, making them more susceptible to the coronavirus. 

In his monthly televised speeches to the nation during the pandemic, President Cyril Ramaphosa rarely acknowledges the plight of people with disabilities or shows compassion for their circumstances. He has voiced concern about gender-based violence, but nary a word about those living with disabilities during Covid-19. 

In his closing remarks to the Presidential Working Group on Disability (PWGD) on the International Day of Persons with Disabilities last year, Ramaphosa made statements about empowerment, employment, inclusion and protection of people with disabilities in South Africa. Yet, he failed to mention how best to serve them and address specific needs and challenges during the Covid-19 pandemic. He further failed to report on how the government was implementing the 2015-2030 Implementation Matrix of the white paper on the rights of persons with disabilities, specifically Section 3.5 covering “protection during situations of risk and disaster”. Subsection 3.5.3 is particularly relevant during a pandemic: 

“Provide accessible emergency services: Municipal emergency services must put in place reasonable accommodation, support systems and trained emergency personnel to ensure equitable and immediate access to these services for persons with disabilities.”

But Section 3 has been neglected by the Department of Cooperative Governance and Traditional Affairs (Cogta) and its Minister Nkosazana Dlamini-Zuma, responsible for the Disaster Management Council and disaster regulations. Cogta documents state that people with disabilities are part of the population and, therefore, covered by all disaster regulations, implying that they don’t need any special treatment.

However, many people with disabilities experience weakened immune systems and respiratory conditions. Such comorbidities profoundly affect those with conditions such as spinal injuries, congenital heart defects, osteogenesis imperfecta (a bone disorder), and Friedreich’s ataxia (a movement disorder). They also negatively impact many other disabled people, making them, like the elderly, more vulnerable to Covid-19 infection and complications. 

Disabled children do not escape the virus, and parents have a real fear of children contracting the virus.

Within months after the start of the 2020 lockdown, several reports highlighted how ill-prepared the National Covid Command Council and its provincial agencies were to accommodate the diverse and specific needs of people with disabilities in our country. 

A Stellenbosch University study found that many disabled people could not access food parcels because of their immobility or the expenses of getting to the distribution points. There is still no official or sustained plan to distribute food parcels, medical supplies and other Covid-19 essentials to the homes of people with disabilities. 

House visits become the responsibility of the various non-profit disability sector organisations (DSOs), funded almost exclusively by philanthropists. Such a situation gives little credence to the government’s claims to foster public and private partnerships during the crisis.

The same study highlights the dependency and abuse experienced by people with disabilities during the first months of the lockdown. A recent Daily Maverick article by An Wentzel highlights the psychosocial impact of Covid-19 on people with disabilities and their caregivers, namely the genuine fear, anxiety and emotional distress about possible exposure to the virus. This distress can only add to the mental health services burden in a country where 30% of the population experience common mental health problems during their lifetime.

This year, some South Africans with disabilities are speaking out about their plight and their frustrations. Mary Louise Ganyile told Voice of America (VOA) News that she had started her life as a child with albinism, poor hearing and low vision, gradually losing her sight as she got older.

“Our government doesn’t care about us. That Covid — I did not hear anyone, from the radio or from the TV, to say the government is holding a workshop or anything to help the people living with disabilities. I didn’t hear anything. So, to me, our government just put us behind,” she was quoted as saying.

Bronwen Jones recounted her feelings about the government’s lack of regard for people living with disabilities based on her experience with severely disfigured burnt children. Many are blind and have lost limbs, her daughter being one.

“The powers that be would probably say she could die because they don’t care about very disabled people and they don’t want to spend money on them, and they make a judgment about highly disabled people and they think their lives aren’t worth living. So that is brutally scary, that they think people’s lives are worth nothing,” VOA News reported her saying.

During the past two weeks, the authors received a flurry of emails and WhatsApp messages from people with disabilities about their plight. These messages specifically related to the demand and need to receive the vaccine for parents, caregivers and people living with disabilities. Emotional at times, they elaborated on the context of being a person with a disability in times of Covid-19 in South Africa, and the fear experienced by parents and people living with disabilities. 

Dennis Hoines contracted the virus in January this year, but fortunately did not spread it to his son or wife. He describes the real fear he and his family face regarding Covid-19 and how they try to adjust to the restrictions of the pandemic:

“My son is a C5 quad. The doctors advise that he should be extra cautious because, like most people with spinal cord injuries, he has little or no functioning immune system. I am at a loss as to why quads do not fall into the same category as the elderly when it comes to being vaccinated. A person with quadriplegia infected with this dangerous virus has a very slim chance of survival. 

“[We] run the house like an ICU, with gloves, masks, face screens and temperature checks whenever carers come on duty, and so far, my son has survived despite his poor immune system. But he is always worried, especially now with the 3rd wave...

“He, like many others, has been cut off from physiotherapy and rehabilitation services — also isolated from his friends. He is very anxious about catching the virus, not being able to cough... so a vaccine would undoubtedly make him feel more secure.”

Simon Whyte has tried unsuccessfully to get a vaccination for his 11-year-old daughter. Due to their ages, he and his wife are not yet eligible for the vaccine.

“Our daughter has Down’s Syndrome, and she has a congenital heart defect requiring multiple surgical interventions and ongoing medical management. She will be due for another heart surgery within the next year or so. We have tried twice with no joy to get special permission for us to get the vaccine soon to protect her from contracting Covid.”

Lauren Jackson is 40 years old and has osteogenesis imperfecta. She describes her circumstances.

“I have been patiently waiting for my turn for a vaccine, desperately hoping that my turn would come in July, only to be disappointed. I am less than a metre tall, in a wheelchair since birth and have severe scoliosis. My disability puts me at high risk for pneumonia and other lung issues. My scoliosis, the result of a lifetime in a wheelchair, further exacerbates this by reducing my lung capacity. I am therefore at high risk should I contract Covid.  Please, can disabled people under 60 at high risk of Covid be permitted to get vaccinated. Many other countries have prioritised the disabled alongside the elderly.”

The plea for vaccination was repeated in all the messages.

The NCCC and the Department of Health neglect the plight of persons with disabilities, their parents and care workers, and staff in the disability sector. 

Unlike the 1.25 million healthcare workers, part of the initial group of vaccination “eligibles”, workers in the disability sector are still not eligible for the vaccine if they do not fall within the required age cohort. Many of these workers undertake daily visits to persons with disabilities of all kinds and severity. Parents, who are natural caregivers for their children with disabilities, are similarly overlooked.

The World Health Organisation’s Strategic Advisory Group of Experts (SAGE) recommends prioritising vaccinations for frontline healthcare workers at high risk of infection, older adults, and those people at high risk of death because of underlying conditions like heart disease and diabetes. The NCCC follows some but not all of these recommendations. 

Rosseta Nair and her husband, in their mid-fifties, are both considered high-risk cases but have yet to receive the vaccine and will only do so in July or even August as they fall into the 50+ age cohort from July. 

“My husband and I are both at high risk as he had a stroke and I have an immune deficiency problem, and we both have high blood pressure. My thyroid has been completely removed. I have calcium deficiency due to my calcium glands being totally damaged.”

If the government is to follow up on its constitutional obligations of ensuring the safety of all South African residents, then people with disabilities, parents of children with disabilities and the disability sector workers must receive the vaccine, irrespective of age. 

In its roll-out, the Department of Health should focus on these groups and include those in public and private disability care centres, and those living at home. While some organisations offer free transport to vaccination centres, some people cannot leave their homes. Home vaccinations for severely compromised people with disabilities must become the norm to save further lives and reduce unnecessary fear and emotional distress. Triages should be part of these visits to ensure that vaccines do not undermine already weak immune systems. 

Now is the time to speak up for those who remain sidelined. As a recent article in Lancet points out: 

“People with disabilities have not been adequately included in the Covid-19 response, resulting in pandemic-related inequities, but also reflecting deeper social injustice and exclusion… commitment to advancing health equity for the remainder of the vaccine roll-out and beyond is paramount. As the so-called new normal is envisioned, the disability community must no longer be an afterthought.”

The HSRC, NCPD and the Institute for Development Studies (UK) are running a survey for people with disabilities, focusing on their experiences during the pandemic. Interested persons with disabilities, family or caregivers can access the survey and further information here or here. DM/MC