As human rights month commemorations drew to an end, the SAMRC’s Gender and Health Research Unit (GHRU) held a webinar to shine a spotlight on the experiences of people with disabilities under the COVID-19 pandemic in South Africa.
Held on 30 March, the webinar was titled “What we know about People with Disabilities under the COVID-19 Pandemic in South Africa: How can we improve our response in times of crisis?”. This was the fourth of the Forgotten Agenda webinar series that started in 2021 with a primary focus on understanding the impact of the COVID-19 pandemic on the lives of young women with disabilities and their need for and access to Sexual and Reproductive Health Rights (SRHR) commodities and services.
Welcoming the attendees, webinar chair Ayanda Nzuza, who is also a Research Technologist at GHRU and Project Coordinator for the Forgotten Agenda, said that despite all efforts to ensure that people have equal opportunities to make the most of their lives, those with disabilities do not yet enjoy life on an equal basis with others in our societies. Nzuza cited that globally, reports have shown that disability-based inequalities have deepened during the COVID-19 pandemic – however, data and information on how people with disabilities experienced the pandemic are not widely available. “Often data collection on disability is an afterthought – hence a Forgotten Agenda, and today we want to share with you research with People with Disabilities under the COVID-19 Pandemic in South Africa,” said Nzuza, adding that the webinar would explore what is known and how we can improve our response in times of crisis.
Disability Inclusive Policy Development
In her keynote address, Dr Praveena Sukhraj-Ely, Chief Director: Governance and Compliance, RPD Branch at the Department for Women, Youth and Persons with Disabilities (DWYPD), gave an update on the Disability Inclusive Policy Development. On government’s efforts to try and understand the socio-economic impact of COVID-19 on persons with disabilities in South Africa, she said her department in partnership with the Office of the High Commissioner on Human Rights (OHCHR) in Southern Africa, have conducted a research study which has provided the much-needed analysis on how various interventions were provided by state institutions to try and promote safety and protection of persons with disabilities during the national state of disaster. The study also gave insight on how South Africa has complied with the requirements of the UN CRPD and Policy Briefs issued by the WHO and the UN with specific reference to disability.
“The recommendations of the research study will assist in implementing state institutions in all spheres of government to adopt effective policy measures for safety and protection of persons with disabilities, to plan for and prioritise disability rights during current and future humanitarian emergencies and national disasters,” she said, adding that the protection and safety of persons with disabilities during situations of risks, national disasters and humanitarian emergencies is a priority for the DWCPD and government.
The research report was officially published and launched by the Minister for DWYPD on the 11th of October 2021 and it is currently being processed through various cabinet structures for consideration.
How did South Africans with disabilities experience COVID-19?
Dr Tim Hart from the Human Sciences Research Council (HSRC), presented the results of a study that sought to investigate how South Africans with disabilities experienced COVID-19.
The study, whose data was collected through an online voluntary survey with nearly 2,000 respondents, primarily looked at the socio-economic, wellbeing and human rights related experiences of people with disabilities. According to Dr Hart, this was possibly one of the largest datasets on people with disabilities’ COVID-19 experiences in a single country.
According to the study, people with disabilities experienced significant household shocks, with 76% experiencing difficulties to pay for basic living expensies, 73% of those needing assistance experiencing interruptions and and many reporting interruptions in access to essential disability and rehabilitation services. Communication also remained one of the major challenges experienced by people with disabilities, who reported very little government intervention. “We found that communication about coronavirus and monthly meetings were inadequate for certain types of disabilities as most rely on television – captions not existent, SASL interpreters were not always visible, hence there were language challenges,” said Hart, alerting that this resulted in confusion about intervention services available.
Moving forward, Hart says the Disability Rights Disaster Framework is far from complete and that it must be completed urgently. He also raised concern over missing disability data. “While South Africa prides itself to have implemented a “Data driven response to COVID 19, this lacks disability data,” he said, also adiding that 83% of the survey respondents feel that government should monitor circumstances during pandemics and ensure continuity of services and monitor rights protection.
SRHR of young women with and without disabilities under crisis
Prof Jill Hanass Hancock, a Senior Specialist Scientist within GHRU presented the results from the Forgotten Agenda study which focuses on SRHR of young women in SA with and without disabilities. She shared the first set of results focusing on the initial hard lockdown level 5 and 4 in 2020.
Hanass-Hancock citied some of the important findings from previous studies which showed that women with disabilties prior to COVID-19 were at increased risk of negative SRHR outcomes while lacking equal access to SRHR services. For instance when disability indicators are included in national surveys these show that the HIV prevalence is higher among people with disabilities than national average. Disability specific research shows that the HIV prevalence among women in some African countries is two times higher among women with disabilities than their peers. Women with disabilities are also two times more likely to experience intimate partner violence (IPV) then their peers without disability and this risks increases with the severity of disability. Furthermore research shows that people with disabilities lack access to SRHR services and young people lack access to Comprehensive Sexuality Education.
Funded by the SAMRC, COVID-Collective and the National Institute of Mental Health (NIMH), the study primarily aimed to describe the impact of the COVID-19 pandemic on the lives of young women with (and without) disabilities and their need for and access to SRHR. In addition, the study also sought to identify the SRHR needs, and services accessed before the COVID-19 pandemic and under the different levels of lockdown during the pandemic (2020-2022), and lastly to describe the experiences of violence over time (before and during different levels of lockdown) and to identify new, promising initiatives and collective actions that include women with disabilities in the COVID response and address their SRHR needs.
The longitudinal cohort study conducted between 2020-22 included 35 young women with and 37 without disabilities aged 18-26, who had completed grade 12 – first participants were recruited in the city of Durban through Universities, Colleges, FET centers followed by peer-to peer recruitment.
The study showed that the lock down regulations impacted young womens life trajectory with many experiencing difficulties to attend to their studies and having to guggle child care, studying and housework. Most of the participants supported their families with their student, disability or child grants. The overwhelming part of the cohort (80%) showed depressive symptoms with women without disabilties sharing experiences of mixed emotions during the hard lockdown in 2020 – happy, sad, or dedicated/motivated, while those with disabilities shared overwhelmingly sad feelings. Another key finding in this section was that only a few participants accessed mental health support; family, friends, religion, and self-motivation were support mechanisms.
Prof Hancock also reported that there was a decline in the use of SRH services during hard lockdown, with some participants citing that they either didn’t see a need as they had limited contact with their partners or were anxious to utilize transport or clinics in fear of contracting COVID-19. Others said public clinics were not providing SRH as nurses focused on COVID-19 and SRH was not seen as essential. “We saw an uptake of SRH services after hard-lockdown (2020) was lifted and SRHR services were recognized as essential,” said Hanass-Hancock, adding that women with disabilities were often accessing services with a family member or friend in order to overcome barriers.
Among other recommendations, Prof Hancock concluded by saying that it is important to develop mental health and wellness services for young people including psychological helplines with chat functions (switch from voice to writing) and to also improve disability accessibility of clinics & GBV services. “In addition, innovate how SRH services are delivered (e.g., information virtually, delivery to house/private place) and review develop pre-, and crisis approaches that decrease gender& disability inequity and double workloads.”
What now?
After discussions, a shared sentiment among all participants was that disability research and data are important before and under crisis, and that it is important that research is used to inform policy and practice. The webinar also highlighted how previous inequalities have been enhanced under crisis, but also how people responded creatively and developed interventions to strengthen inclusive progress in the years to come. Furthermore the webinar shared two good practise examples. Firstly the DOH in collaboration with ARRC and SAMRC developed a module on SRHR and disability which is now available on the knowledge hub. Furthermore the SAMRC supported ARRC who developed comprehensive SRHR information material for young women with and without disabilities.
Forgotten Agenda Webinar Recording (in English and SA Sign Language) | View