Disability and Spatial Exclusion Under COVID-19 in South Africa

Abstract

The COVID-19 pandemic exposed a range of existing inequalities. People with disabilities are disadvantaged worldwide and frequently denied spaces within personal and public contexts. This article focuses on the environmental and functional experiences of people with disabilities and service providers in South Africa during the pandemic. Lockdown conditions resulted in diminished spaces and loss of agency, consequent to increased dependence on families, the state and the non-governmental organization sector. Service providers had to suspend most services and experienced a lack of government support and collaboration. Mental health issues emerged as a key concern. Despite challenges, online technology provided opportunities for ongoing support, learning, and delivery of certain services. Such findings highlight the need for greater stakeholder collaboration with people with disabilities and their organizations toward increasing their agency and representation, and assessing disability-inclusive policy.

Background

Constituting 16% of the global population (World Health Organization [WHO], 2022), people with disabilities have historically experienced challenges to functioning and participation in society on a regular basis prior to the onset of the COVID-19 pandemic (Abbott & Porter, 2013; Groce et al., 2011; WHO, 2022). They are regularly denied spaces for intimacy, privacy, occupation, citizenship and freedom at both a public and private level. The pandemic exacerbated these challenges by introducing restrictions to mobility and social life.

Accessible built environment and transport structures represent gateways to accessing a range of basic rights (Hammel et al., 2015; McKinney & Amosun, 2020). Consequently, inaccessible built environments, along with systemic barriers across other sectors, prevent people with disabilities from participating effectively as recognized equal members of society (Katsui, 2020; Meekosha & Soldatic, 2011). Inaccessibility affects negatively on essential areas such as health care, education, occupation, recreation, and access to justice, as well as on the fundamental aspects of quality-of-life issues such as relationships, autonomy/self-advocacy, and independence within communities (Oliver, 2017; Watermeyer & McKinney, 2021. WHO (2022) reports that compared with their able-bodied counterparts, people with disabilities die up to 20 years earlier, are at double the risk of developing health conditions (depression, diabetes, etc.), find accessing health facilities six times more difficult, and find inaccessible/unaffordable transport 15 times more challenging.

During the COVID-19 pandemic, many people with disabilities experienced significant barriers, including accessing information, and were excluded from receiving life-saving health care services and support, rehabilitation, and vaccines (McKinney et al., 2020; Ned et al., 2021). Many triage policies and medical rationing protocols directly discriminated against them (Banks et al., 2021; McKinney et al., 2020; Ned et al., 2020; Shakespeare et al., 2021). Although the importance of disability-inclusive COVID-19 responses is well documented, recent research has highlighted the deep cracks in social equality and justice for people with disabilities globally as a result of the pandemic (Armitage & Nellums, 2020; McKinney et al., 2020).

Despite dedicated international policy and legislation on disability inclusion, service delivery across all sectors is undermined by a distinct lack of translating such policy frameworks into practice. Professionals across a range of disciplines graduate without having received any sensitization, education, and/or training on disability issues (McKinney & Amosun, 2020; Shakespeare & Kleine, 2013). Consequently, they do not know how to accommodate people with disabilities in everyday practice. People with disabilities are commonly denied access to mainstream society, including a “place at the table” regarding decision-making processes that affect on their lives, citizenship and everyday existence (McKinney et al., 2020; McKinney & Swartz, 2019; Ned et al., 2020; Watermeyer & McKinney, 2021). Marks (cited in Lister, 2007) further highlights that representation issues cannot be separated from structural issues. This stipulates the need for an inclusive society where difference and common humanity can be embraced.

Moreover, while people with disabilities are disadvantaged globally, these disadvantages are significantly more obvious in low- and middle-income countries (LIMCs), where people with disabilities are representative of the most vulnerable population group across the Global South (Banks et al., 2021; WHO, 2015). For example, 85% of children with disabilities in sub-Saharan Africa lack access to schools and basic health education. The prevalence of noncommunicable diseases such as stroke, etc., in the region, comprises 80% of the global total. People with disabilities in LMICs struggle greatly with the natural and built environment due to underdeveloped infrastructure and rural conditions. Lack of accessible public transport such as buses or trains negatively affects their ability to access clinics, hospitals, school, work, or places of recreation (Tshaka et al., 2023). Such situations render people with disabilities extremely vulnerable to inequities and exclusion.

Due to a lack of personal wealth and established government systems, the overwhelming majority of people with disabilities in the Global South have to rely on their families and friends to be their caregivers, providing them with personal assistance. These factors frequently generate a sense of isolation, and anxiety related to being a burden to caregivers, especially family members (Watermeyer & McKinney, 2021). Furthermore, access to assistive devices or technology, which could significantly benefit participation, such as wheelchairs, hearing aids or adapted computers, is significantly lacking in the Global South (Barnes, 2011; Puli et al., 2021). Most lack access to accessible formats of information, including Braille, or communication services such as sign language interpretation.

This spatial cultural context sets people with disabilities apart and at immediate disadvantage in most walks of life. It is against this background that we report on a South African study that explored the experiences of people with disabilities, and organizations that assist them, during the COVID-19 pandemic.

The South African Context and COVID-19

Since becoming a democracy in 1994, policy in post-apartheid South Africa has focussed on individual rights and freedom from discrimination, including the rights of people with disabilities. South Africa was the second country to ratify the Convention on the Rights of Persons with Disabilities (United Nations [UN], 2007), and has a disability-inclusive approach at policy level, as expressed in the White Paper on the Rights of Persons with Disabilities (WPRPD) (Department of Social Development [DSD], 2015). However, these policies tend to be created in silos and lack cohesion. Furthermore, as an under-resourced country (as are most LMICs) with a racially- and economically-divisive past, South Africa remains arguably the most unequal nation in the world (Hino et al., 2018). This has a significant and negative impact on ongoing disability exclusion.

Considering that vulnerable populations throughout the world have been disproportionately affected by its impact (McKinney et al., 2020; Ned et al., 2020), the intersection of the South African context with COVID-19 immediately suggests a complex situation fraught with challenges for people with disabilities. Similarly, service providers who assist people with disabilities with capacity also came under threat from pandemic conditions. It was, therefore, important to investigate the experiences of both to gain a deeper understanding of the impact of the pandemic on everyday functioning, thus exploring strategies and possible (short- and long-term) solutions to these challenges. Drawing from the data of a national survey investigating experiences during COVID-19, and consequent one-on-one interviews with individuals with disabilities and service providers, this article focuses on the impact of the pandemic on the spatial and cultural activities of people with disabilities, while also considering other key environmental factors that influence independence and participation within the built environment.

Method

Data presented here are drawn from a mixed methods study which was conducted across South Africa’s nine provinces, to document the experiences of people with disabilities and service providers. The participants included people with disabilities and Disabled People’s Organizations (DPOs) that served both children and adults with disabilities. DPOs in South Africa are membership-based organizations, many of which are managed and controlled by people with disabilities. They constitute the representative voice of people with disabilities on the basis of their demographics. Organizations managed by parents of children with disabilities also fall under the classification of DPOs in South Africa.

The two participant groups were selected to gain a deeper understanding of the impact of the COVID-19 pandemic on the sector of service delivery that facilitates the level of functioning, independence, and participation of people with disabilities, from both the receiver and provider point of view. It was anticipated that investigating these experiences would further assist in identifying barriers and facilitators to increased functioning, as well as possible recommendations for future disability-inclusive responses to the pandemic.

Initial data were gathered quantitatively via two online surveys [using the SUNSurveys platform of Stellenbosch University, Cape Town, South Africa]. One survey was dedicated to the experiences of people with disabilities, while the other survey focused on the experiences of DPOs, during the COVID-19 pandemic. The survey was distributed using email via all existing provincial or national service DPOs country-wide, both generic (such as Disabled People’s South Africa, etc.) and specific groups (such as Quad/Para Association of South Africa, etc.), and other disability-related networks, to their members. The surveys were presented in easy-read English (as budget limitations precluded translation to all South African languages) but were compatible with disability-related software used by people with visual impairments.

The survey was piloted in two rounds, and feedback was used to improve the survey. Two members of the research team identify as people with disabilities and assisted with improving the survey. During the distribution, the organizations were briefed regarding the intended purpose of the survey and invited to participate and circulate the link to their membership. Specifications regarding eligibility for participation in each survey were clarified, and contact details for queries were provided.

The surveys included questions under six thematic areas, namely, about the organization, access to information on COVID-19, access to health facilities and services, access to other services, and participation in decision-making and governmental involvement. Data from the survey were descriptively analyzed using these six key thematic areas.

One hundred responses were received from participants in eight of the nine provinces of South Africa, as follows: Western Cape Province (52). Gauteng (17), Eastern Cape and KwaZulu-Natal (11 each), Northern Cape (4), Limpopo (3), and North-West and Mpumalanga (1 each). Participants’ ages ranged between 2 years (with caregiver proxies) and 76 years. Most were between 26 and 38 years of age. Fifty-seven percent of the participants identified as female, 42% as male, and one person identified as non-binary. This survey assisted in recruiting participants for the qualitative phase. The impairments, or disability types, represented in this study included the following: people experiencing difficulty walking or climbing (20%), people with visual impairments (16%), with 15% selecting “other” when describing their disability type. In addition, 9% of participants identified as having difficulty gripping, holding, or lifting, while 8% selected feeling depressed, sad, or moody. Six percent of participants identified as having hearing impairments, and 6% identified as feeling anxious. Five percent of participants selected remembering and concentrating difficulties. Four percent of participants identified as having learning impairments, 4% selected other mental health conditions, with an additional 4% choosing communication as a disability type. Finally, 2% of participants found carrying out simple instructions difficult, while 1% identified as having intellectual and developmental impairment.

Regarding organizations, any employee or representative of the organization could complete the online survey. Seven organizations were represented (predominantly) by the director of the organization. Other respondents’ roles were: caregiver in the organization (1); rehabilitation therapist (1); and national programs’ managers and coordinators (2). Nine of the participating organizations provided services to a range of disability types, one addressed only physical impairments, and one addressed all impairments except intellectual disabilities. The services provided included: educational support; advocacy and training; economic and skills development; special care (residential and day care services); assistance with health care of people with disabilities, including counseling; and support groups and capacitation of people with disabilities and their families.

From the qualitative perspective, the online surveys invited both individuals with disabilities and service providers to take part in follow-up, in-depth, one-to-one interviews. There was one interview per person/organization. Interviews were conducted remotely by one member of the team, telephonically or via online platforms (such as Zoom, MS Teams, or WhatsApp) to gather narrative and information-rich data. These interviews were of between 30 and 60 min in duration. From people with disabilities, while 18 indicated a willingness to participate in the in-depth interviews, only 14 could be reached. From organizations, six of the seven respondents could be reached for interviews. The organizations were located across three provinces, namely, Gauteng Province, Free State, and Western Cape.

Full ethics approval was provided by the Stellenbosch University Social, Behavioural and Education Research Ethics Committee [REC: SBE-2023-15244].

Two researchers, including the primary investigator (PI) and one co-investigator, conducted the first level of analysis. The other two co-investigators cross-checked the analysis against raw data. Responses from the online surveys were read through and reflected upon to formulate the face-to-face interview schedule and questions. Questions included: “What are your main concerns about the Coronavirus?”; “How do you think a disability-inclusive emergency response should be like?”; “What would you say are the best ways of protecting yourself?”; “What does lockdown entail for you, for instance, who buys your food?”; “Who are you in contact with and how?”

The qualitative data from the interviews were transcribed. Using a deductive approach, thematic analysis was conducted using the International Classification Specifications of Functioning, Disability and Health (ICF) (WHO, 2001) as an analysis framework. Key to the ICF is the fact that it recognizes disability as the result of a person’s impairment and their interaction with their environment (Madden & Bundy, 2019), which comprises five key contextual factors: physical environment; support and relationships; products and technology; systems, services and policies; and attitudes toward disability. The ICF also considers personal factors (such as coping mechanisms) as an important contextual factor that may affect functioning. The ICF presents “ease-of-use” because of its all-encompassing view of human functioning, and is a suitable tool to investigate the spatial cultural factors that influenced the overall agency of people with disabilities during the COVID-19 pandemic (Cerniauskaite et al., 2011; Madden & Bundy, 2019).

Findings

The findings are presented using two broad categories, namely, challenges (with four themes) and facilitators to empowerment (with two themes).

Challenges to Empowerment

In this section, we document the way in which the pandemic resulted in people with disabilities experiencing Diminishing spaces, Loss of agency through increased dependence, Negative attitudes toward their disabilities, and Developing mental (ill) health issues.

Diminishing Spaces

COVID-19 mitigation measures had a significant impact on the ability of people with disabilities to access public spaces. In particular, the issue of transport remained extremely challenging and had a ripple effect on their ability to access education, employment opportunities, and other services, with consequent loss of access to resources. Within university environments, students lost communication with lecturers and classmates due to campus closures. Others struggled with creating workspaces within their campus residences or homes:

At work I’m able to print while here at home I don’t have printing facilities. (Participant with a disability)

Transport challenges also disrupted caregiver services. This severely affected on their mobility and worsened when longer distances were involved. In rural areas, many people with disabilities could not access health care facilities for regular therapy, emergency treatment, or support services. These challenges led to disabling disruptions as many were simply cut off from services.

Activities in public spaces, such as shopping to acquire essential goods, presented challenges regarding social distancing and using personal protection equipment (PPE). Reducing contact was impossible to practice for people with visual impairments because they relied on people to guide them. In addition, their reliance on touch meant that they had to constantly sanitize their hands, and shop signs indicating available sanitizers were not always clearly visible. The use of masks made lip-reading difficult for those with hearing impairments and was invasive to those with respiratory difficulties. Participants described a lack of collaboration or accommodation for people with disabilities at shopping centers, such as arranging specific (quieter) times when people with disabilities could receive dedicated assistance from staff to meet their shopping needs.

The lack of social distancing and taking protective measures by community members was daunting for those who were visually impaired or wheelchair users:

These taxis charge for wheelchairs because they say you occupy another space . . . another problem.. . . You don’t know whether the person lifting you in the taxi is infected or not. (Participant with a disability)

Service providers also experienced severe disruptions in services due to restricted mobility and access to public spaces. For example, social workers could not go into communities and had to cancel community outreach programs as well as face-to-face home visits. Services within clinical spaces, including hospitals and health care facilities, such as counseling therapy sessions, were similarly suspended. Although PPE was provided for hospitals, most organizations servicing people with disabilities were not provided with PPE by the state, and many had to rely on donations or do without. This also negatively affected the ability of staff members to go out in the community. Within residential homes residents had to be kept away from communal spaces for their own safety.

The closure of spaces providing nurturing, safety and education, such as child day-care centers, generated fear and anxiety among service providers who were seriously concerned about the lack of ongoing therapy and educational programs for children with disabilities. Many children (and adults) with disabilities relocated home, putting them at greater risk of contracting COVID-19. Consequently, spaces of sanctuary became areas of confinement as some found themselves prisoners in their own rooms. Many families did not have the resources, experience or capacity to look after their children with disabilities at home on a constant basis:

So when the center is closed there is no place where they get food. (Service provider)

Loss of Agency Through Increased Dependence

During lockdown participants with disabilities experienced increased reliance and dependency on their family members/caregivers (for personal assistance and emotional support), the state (social grants) and the non-governmental organization (NGO) sector (food parcels) for daily survival. Elderly parents were sometimes reliant on their extended family members for assistance.

This dependence put participants at further risk of vicarious exposure to the Coronavirus. It also meant that many could not isolate if they contracted the virus. Some were fortunate to have employed personal care assistants, who helped them negotiate personal spaces and assisted with their daily needs and activities, however, others had to struggle alone. Participants with disabilities worried constantly about the well-being of their caregivers (whether employed or family members) and the external spaces they were occupying, in the face of the pandemic. Moreover, the sense of heightened dependency re-emphasized a feeling of being left stranded by a health care system that did not accommodate them. Many identified that should they contract the virus, home-based care would be the only option because the existing emergency clinical spaces, including triage processes and intensive care units, did not accommodate people who needed personal care or used assistive technology:

There’s no structure in place on how they’re going to treat me as a quad [quadriplegic]. (Participant with a disability)

Beyond dependency on assistance for personal care, the majority of people with disabilities relied heavily on the state monthly disability grant of approximately R1860 (approximately US$128/€110) for daily survival. The South African government introduced an extra grant of R350 per month (approximately US$24/€21) during the COVID-19 lockdown period to help people with disabilities and other vulnerable groups to cope financially. Although this was of some benefit, it was insufficient to cover costs. In addition, access to government spaces and services was limited during lockdown and bureaucratic processes were slow, leaving many participants stranded. Provision of food parcels by the state or NGOs was a welcome relief for many people with disabilities who could not access or afford essential goods. However, these food parcel programs similarly did not reach all those in need, leaving some struggling without vital supplies.

Furthermore, numerous service providers faced depletion of capital and insufficient relief from the government. Fundraising activities were severely affected by COVID-19, resulting in huge income losses. Staff members, including those with disabilities, of service provider organizations that could no longer afford salaries had to claim for unemployment benefits or disability grants. Many organizations applied for government funding, however, it soon became apparent that state structures were not equipped to respond as allocated funding for the care/disability sector was grossly inadequate.

Overall, the lack of financial support for people with disabilities and service providers alike led to denied access to occupational and/or operating spaces. They felt abandoned and unsupported during the pandemic and highlighted a concerning lack of collaboration between the disability sector and the government, who lacked presence in the community and ran a number of relief programs without consultation with DPOs or community/rehabilitation organizations:

No, it’s always like we are an afterthought.. . . I definitely don’t think that we are considered. (Participant with a disability)

Negative Attitudes

Underlying many of the systemic and physical factors mentioned above, a range of negative societal and cultural attitudes toward disability further affected on spatial and cultural access.

People with disabilities identified negative (homogeneous) community views toward them, denying their right to self-advocacy. These views regarded people with disabilities as being sick, infantile and in constant need of charity and/or care:

The people in that restaurant would not talk to me, they’ll ask my son, “What does he want?” (Participant with a disability)

Furthermore, the perceived “infirm condition” of people with disabilities intensified during COVID-19. Participants reported a distinct lack of understanding about disability (including the causes, lived experience, impact and consequences of having a disability) from members of the public and professional services alike:

They now think disability is infectious. (Participant with a disability)

A number of service providers were particularly concerned about the negative attitudes of parents, highlighting that many did not place value on their children with disabilities:

Most of the parents they feel like if the child has special needs then [the situation] is dead, nothing can be done. (Service provider)

The lockdown situation was exacerbated by a lack of credible information. The virtual space of information technology and social media exposed ignorance and certain community stereotypes regarding disability, leaving many participants confused and angry. The spread of misinformation was particularly disruptive of the programs offered by service providers:

[Fake] news spread that somewhere they are giving away food. We had to advise our beneficiaries to be careful not to believe in everything they hear. (Service provider)

Dealing With Mental (Ill) Health Issues

The majority of people with disabilities battled psychologically due to the Coronavirus, and this negatively affected their ability to function within personal and public spaces. Key anxiety stressors included becoming isolated, lack of finances and compromised livelihood, and being worried about contracting the virus. For those with pre-existing psychosocial conditions the situation was compounded by limited access to health care services:

It’s a major, major thing, the feeling that I can’t do anything. (Participant with a disability)

Service providers experienced added stress related to concern for their clients, especially children with disabilities. Managers felt extreme pressure from the responsibility of trying to keep their organizations, including staff, operational and financially afloat during the pandemic. The situation was compounded by limited access to health care services, and both people with disabilities and service providers identified the need for increased emotional support and the expanded availability of psychosocial services during COVID-19:

I actually need to go to a psychiatrist to get some medication.. . . I’m struggling with concentration and stress management. (Participant with a disability)

Facilitators to Empowerment

In this section, we share two key areas that increased the agency of people with disabilities and service providers. These were Technology as an enhancer of connection and opportunity and Community support.

Technology as an Enhancer of Connection and Opportunity

Virtual spaces were important in fulfilling many areas of life during the pandemic lockdown. For some, access to virtual space via online assistive technology presented a potential facilitator to improve functioning, participation, and provision of services. Taking advantage of software and online and/or other tech services enabled some people with disabilities to reach higher levels of autonomy. This included being able to attend online lectures or downloading resources for studies, as well as developing new skills on creative programs:

[Online communication] benefits me because I’m learning to be more independent. (Participant with a disability)

Many made use of government and commercial online services to do shopping online and to access social grants and other financial resources. This protected participants from the risk of exposure to the Coronavirus. For others, just being connected to social media had a significantly positive impact on their well-being, especially given that hard lockdown decreased spaces for human touch, presence, and togetherness. Participants could connect with family and friends as well as support networks. It also provided some with a space to express themselves, particularly those who were grieving:

It was actually a comfort to me to . . . go on Facebook and say, “I miss you Mom!” (Participant with a disability)

Having access to a range of technological media, including government and social news sources, left people with disabilities feeling satisfied that they had received adequate information about the pandemic and lockdown, and in that sense, felt “connected” to the world outside in general:

At the moment my laptop is my best, best friend. (Participant with a disability)

Online technology also provided a space for service providers to maintain support structures and services. They made regular use of email and social media platforms to continue communication with clients as well as staff, and some even set up 0800 numbers for people with disabilities or their families to make contact if they needed more information.

Applications such as Zoom and WhatsApp made available effective virtual spaces for group and face-to-face therapy sessions and workshops. Online videos helped therapists with training and practical assessments, such as providing feedback to clients on the development of their babies with disabilities. These virtual spaces have helped facilitate a new era of telerehabilitation, enabling much needed service delivery in a range of areas and bringing welcome relief to many people with disabilities. Often clients needed to be provided with data for online videos which could become expensive, especially if sessions were long:

We look at the video together as speech, physio, and occupational therapist, come up with the home program, and send them back to them via WhatsApp messages, in writing or in video clips. (Service provider)

Prevailing challenges that denied access to technology and/or virtual spaces were also identified. Service providers expressed concern over many of their clients who were vulnerable, poor and who could not afford smartphones/devices or connection to the internet or any media platforms. This finding highlights the lack of access to information and the consequent isolation of many, especially people with disabilities who live in the less developed and/or vast rural areas of South Africa.

Being denied access to technology or data had a damaging impact. Besides losing a space to connect with family and friends, many students with disabilities could not continue with their online studies or skills development programs:

I feel lost [when I cannot connect], I feel alone. (Participant with a disability)

Community Support

Among the prevailing challenges to health care and other essential services during the COVID-19 pandemic, there were positive instances of support for people with disabilities from family, community members, and community programs. Families, neighbors, and close friends were a regular source of support throughout the pandemic. Some participants were part of community and/or faith-based groups that donated or distributed essential goods throughout the communities, and they drew a sense of solidarity and purpose from being involved in such groups:

I’ve seen the difference it makes, and I’m very grateful for everybody helping out. (Participant with a disability)

Other participants drew strength from the ongoing assistance and encouragement they received from their places of work or study. The positive feedback not only provided income but also boosted their spirits and enhanced their sense of empowerment:

Luckily, my employer is understanding, so I’m working from home. (Participant with a disability)

Discussion

The findings illustrated how pre-existing inaccessible spaces (McKinney & Amosun, 2020) significantly contributed to the disempowerment of people with disabilities at both personal and public levels. Diminished access to the built environment and transport systems severely affected on occupational spaces, living spaces, care spaces, and the ability to acquire essential goods and services.

The findings also exposed an inadequate care system that was limited in its care provision even prior to the pandemic (Eide et al., 2015; Hussey et al., 2017). As such, many people with disabilities resorted to family members as carers during the pandemic. In cases where family members were not available, some were left isolated, excluded and without the necessary care required. At a personal level, the sheer dependency on others (and inability to reduce contact) placed many at constant risk of exposure to COVID-19, while being left with no assistance was also risky for those who needed personal assistance for day-to-day activities. These challenges at both levels exposed the distinct lack of inclusive emergency services and planning, including general services for people with disabilities, particularly within the health care/psychosocial sector (Abbott & Porter, 2013; McKinney et al., 2020; Ned et al., 2020; Shakespeare et al., 2021).

A distinct “disconnect” exists between the experiences of people with disabilities and the functioning of a government that purportedly rejuvenated its commitment to disability rights and inclusion when adopting the WPRPD in 2015 (DSD, 2015). The inability to access the built environment (including infrastructural spaces and transport systems) is directly linked to prevailing systemic and attitudinal barriers that deny people with disabilities the capacity for self-representation, developing agency, and achieving independence. This strongly concurs with research on other LMICs (Banks et al., 2021; Tshaka et al., 2023; WHO, 2022).

The findings further revealed that access to the built environment, information, basic services, and political participation (and the associated empowerment) of people with disabilities is strongly influenced by their connection to policy and programs via state structures and their service providers/DPOs (Lorenzo et al., 2019; Rule, 2013; WHO, 2010). In this context, the findings revealed a heavy reliance on DPOs and their ability to monitor, evaluate and contribute to service delivery for people with disabilities. However, these service providers themselves were hamstrung by inaccessible infrastructure, lack of collaboration, and limited funding and support from the government during the COVID-19 pandemic. These shortcomings had a negative impact on the ability of people with disabilities to advance their self-empowerment through accessing services. This generated feelings of abandonment for both people with disabilities and service providers alike, especially within the health care sector.

The findings re-emphasize the disempowerment experienced as a result of inadequate government commitment and implementation of disability-inclusive programs (McKinney et al., 2020; Ned et al., 2020; Shakespeare et al., 2021). These inadequacies were pre-existent prior to the pandemic, and it can be argued that they exacerbated the impact of the pandemic on people with disabilities. Disempowerment during the pandemic was intensified by the fact that many people with disabilities were to varying degrees forced into a state of dependence. Such scenarios perpetuate prevailing negative attitudes toward people with disabilities as objects of charity lacking value and identity, and even being burdensome within their families, communities, and society at large (Rohleder & Swartz, 2016; Watermeyer & McKinney, 2021). Moreover, this situation fuels the dependency model, with people with disabilities relying heavily on social grants and state health care for survival, a reality which has been created within South Africa (Ned et al., 2020; Rule, 2013). To progress from this status quo, a change is needed—a change that requires the increased public visibility and interaction of people with disabilities in South African society.

It is clear from our data that most respondents had access to the internet and data. The benefits from online and assistive technology revealed in the findings indicate that providing spaces for education, skills development, occupation, and recreation, as well as increased engagement with service providers, for people with disabilities can develop their capacity significantly (Abbott & Porter, 2013; Barnes, 2011; Puli et al., 2021). Indeed, the area of telerehabilitation shows great potential in enabling service providers and people with disabilities, in lieu of physical community interaction, to address a range of health care needs. Among the more urgent of these required is the area of psychosocial services to respond to increased mental health issues resulting from the pandemic. However, given that South Africa is a deeply divided country, a majority of its population was excluded from this study. This is the same population that would not be able to access virtual or tele-services due to poor connectivity, inaccessible data costs and not having smartphones. This digital divide reality as a key spatial limitation to access results in a significant amount of people with disabilities being left behind (Ned et al., 2020, 2021).

Given that disruption of services as part of the pandemic contagion responses is detrimental to the well-being and agency of people with disabilities and puts extreme pressure on families, alternative supports are needed urgently. The instances of community support highlighted how effective they can be in promoting agency within people with disabilities (Lorenzo et al., 2019; Ned, 2013; Rule, 2013). However, these instances were few and data suggest that they were achieved in spite of a lack of government collaboration. Thus, more support for DPOs is needed to enable these organizations, which deliver community-based support and practical services, to develop alternative ways of supporting people with disabilities and their families. Any future development of such services must include collaboration with people with disabilities at all levels of designing, planning, and implementation (McKinney & Swartz, 2019; McKinney et al., 2020; Ned et al., 2020).

The essential role that service providers from these DPOs have played, and continue to play, in addressing and/or maintaining the basic needs and rights of people with disabilities during the COVID-19 pandemic, particularly in response to the generally inadequate (and often non-existent) service delivery of the state, cannot be underestimated (McKinney & Swartz, 2019; Ned et al., 2020). However, the current lack of networking demands vastly improved, extensive collaboration and partnership with the government and private sector from grassroots to parliamentary level—all levels of political participation and associated physical and virtual “spaces.” This should include capacity building (including fundraising and technical skills) and support (budget and resources to monitor and evaluate effectively), as well as working together on emergency responses and health care procedures (McKinney et al., 2020; Ned et al., 2020; Shakespeare et al., 2021). To support the precarity of the services they provide, and enhance sustainable delivery, more long-term funding is needed from the government.

Limitations of the Study

As described, all the participants had online access and thus could take part in the study, however, this automatically excluded most of the people in South Africa who do not have constant and/or adequate access to internet and technology—an issue linked to the spatial design of the apartheid government of South Africa. This is a shortcoming as they may have identified other factors that impact on their access to the environment and spatio-cultural activities. An added limitation of the study is that the size and depth of the sample are relatively limited compared with the vast number of people who have disabilities, and also the range of disability types, that prevail across South Africa.

Conclusion

The findings of this study showcase many changes introduced by the pandemic restrictions related to the ability to move around freely in different spaces (diminishing spaces). These changes were something of a double-edged sword. For instance, we see how people with disabilities had to negotiate navigating the danger of not having their needs met (through not having personal assistants) versus the risks of exposure to COVID-19 (through personal assistants who relied on the enclosed space of public transport thus placing them at high risk of getting COVID-19). We also see how direct support is interlinked with ongoing contact with others, including colleagues, family, and friends, as both providers of care and as relations that assist with managing vulnerability (for instance, the participant who says they could gain better educational support when they could be in touch with others at the library versus being at home and relying on remote learning). This shows how spatialities of such contact were disrupted during the pandemic.