COVID-19 Survey on Persons with Disabilities: Enabling better responses to future crises

The national COVID-19 Survey on Persons with Disabilities in South Africa is due to start in 2021. The HSRC’s Tim Hart, one of the study coordinators, answers some questions about the upcoming survey and how it aims to shed light on the socioeconomic, well-being, and human-rights-related experiences of people with disabilities during the COVID-19 pandemic. Edited by Andrea Teagle

Tim Hart, senior research manager in the HSRC's Developmental, Capable and Ethical State research division.

What gave you the idea for the survey? 

In early May 2020, I proposed that the HSRC and the National Council of and for Persons with Disabilities conduct a study that looked specifically at the challenges encountered by persons with disabilities during the COVID-19 pandemic. Most of the work arising from COVID-19 surveys in South Africa have largely ignored this group or exclusively focused on support organisations and carers, or specific groups and disability types. Two national surveys – one led by Stellenbosch University (August 2020) and the other by the Ministry of Women, Youth and Persons with Disabilities (Jan 2021) – have since attempted to fill this gap in understanding. However, there is a need for research that reaches a larger and more representative sample of this population in SA.

Shortly after that, I noticed a call for research proposals from United Kingdom Research and Innovation, and we submitted a joint proposal, with the Institute of Development Studies in the United Kingdom as the lead. The focus of our collaborative study is to include the voices of all persons with disabilities. We want to get a better understanding of their socioeconomic, well-being and human-rights-related experiences during COVID-19 in South Africa.

I imagine that raising awareness might be difficult given the diversity of impairments, especially in South Africa where socioeconomic contexts are also wide-ranging. How do we have an inclusive conversation around disability, and make sure the needs of people with disabilities are not overlooked?

One of the challenges is that those who identify as persons with disabilities are not always a cohesive group. There is a need to engage them in inclusive conversations. We also need to support conversations with those who work and socialise with people with disabilities. Often ignorance, misunderstanding and stereotypes create social rifts and discord. 

It is important to remember that people have impairments: society is disabling due to its ignorance about these and their diversity. Society consequently does not realise how it manufactures disabling physical and social environments and creates stereotypes. 

Many organisations simply focus on ramps and toilets and think they have ensured reasonable accommodation. However, this is often done by simply altering existing facilities without consulting experts and persons with disabilities. 

Furthermore, many interventions that could help to remove disabling factors are also beneficial for those without impairments. For example, subtitles, better lighting and acoustics, clearer speech, and manoeuvrable spaces that accommodate people with wheelchairs etc., benefit many other people as well.

How might persons with disabilities have been differently affected by COVID-19 

Everybody has been affected by COVID-19 in some way; losing loved ones, suffering job losses, etc. But, as a vulnerable population with generally poorer access to services, many persons with disabilities will have been more harshly affected. 

During lockdown, some people with disabilities were unable to obtain necessary services. For example, access to audiologists and optometrists were reportedly restricted during level 5, meaning that hearing aids and spectacles could not be repaired and replaced. 

Others could not access public transport to get to private and public hospitals. Similarly, some caregivers were prevented from assisting clients or could not perform their functions suitably due to travel restrictions. 

People with severe impairments are likely to have been worse affected, as well as individuals in low-income socioeconomic areas, the unemployed, and those who lost their jobs due to COVID-19 regulations. Women, children and the elderly with impairments may also have felt the effects differently. There have also been reports that people who had applied for temporary disability grants several months before lockdown had these stopped and they had to access the Social Relief of Distress Grant, as reapplications had been suspended.

On a slightly more positive note, COVID-19 has shone a spotlight on just how fractured our society is, and some steps are being taken to address this state of affairs. Whether these good intentions will continue is yet to be seen.

Were people with disabilities included in the state response?

It would seem not specifically and not clearly. The White Paper on the Rights of Person’s with Disability and the related Implementation Matrix points out some crucial requirements. However, the regulations did not make particular allowances for persons with disabilities and they were treated much the same as other members of the population, despite their specific needs. 

One of the purposes of our research is to explore this issue deeper, including the regulatory and personal experience perspectives. 

In May 2020, two men keep their physical distance on a bus in Brisbane, Australia, a country that was spared much of the COVID-19 pandemic at the time. Only the person in the wheelchair is wearing a face mask. Photo: John Robert McPherson, Wikimedia Commons

How will survey participants be reached?

Essentially this will be a snowball sample. Participants will initially be reached using various public, private and civil society stakeholder networks. We would like to get responses from at least 4 000 people with disabilities. Completing the survey and providing us with findings is in their interest. 

One of the challenges is that a detailed database of persons with disabilities doesn’t exist as organisations interact with different persons with disabilities in different ways, and different legislation has different ways of identifying persons with disabilities. Hence the need for an inclusive snowballing approach.

How might the research inform future responses to crises?

We will analyse participants’ reported experiences and look at how this information can be used to advise policy. We will also present the findings at webinars where persons with disabilities will have the opportunity to give us further feedback.

Several local and international organisations have supported research on the experiences of persons with disabilities during COVID-19, and hopefully the government will work with these organisations, and with us, to improve the circumstances of persons with disabilities in the event of future disasters, and also more generally.

Note: This national research project is funded by United Kingdom Research and Innovation through the UK Government’s Global Challenges Research Fund and the Newton Fund. Partners include the HSRC, the National Council of and for Persons with Disabilities, and the Institute of Development Studies in the United Kingdom.

Authors: Tim Hart is a senior research manager in the HSRC’s Developmental, Capable and Ethical State research division. He is profoundly hearing impaired. Interview conducted by Andrea Teagle, a science writer in the HSRC’s Impact Centre. 

thart@hsrc.ac.za

Further reading: 

The disabling and enabling effects of COVID-19 by Tim Hart, 3 December 2020.

The impact of hearing loss: Dealing with silence and noiseHSRC Review, December 2017

Adapting to a visual disability: It develops gritHSRC Review, December 2017

Moving closer to the screenHSRC Review, December 2017

Enabling the able-bodiedHSRC Review, December 2017

SA is failing deaf and hard-of-hearing learners: Can a bilingual model of education be the solution to acquiring literacy?HSRC Review, December 2017