International Perspectives: Disabilities, Social Connectedness, and COVID-19

Globally, the COVID-19 pandemic negatively impacted the families of persons with disabilities (PWD) in similar ways. The theme of social isolation, due to disruption in community programming and health services, emerged in interviews with three family members of PWD living in the United Arab Emirates (UAE), the United States (US), and Ireland. Although the pandemic resulted in varying lengths and severity of COVID-19 restrictions in the three countries, the families expressed the universal difficulty of living with uncertainty, while losing daily support systems, social circles, and routines that are essential for persons with disabilities (PWD); resulting in a lack of social connectedness. In this piece, we will detail the experiences of three Special Olympics International (SOI) connected families and how they navigated the pandemic. 

Perspective from the United Arab Emirates (UAE)

Dragana, a Serbian expatriate living in Dubai, and mother to a child with a rare genetic disorder, recalled her “guilt that [her child will] lose the opportunity to progress and develop further” after losing access to essential therapies at the peak of the pandemic. Confined to an apartment, working full-time, living away from extended family, and helping the children with virtual schooling without the usual support systems, overwhelmed the family’s capacities.

One factor that alleviated their sense of isolation was a Dubai government policy that allowed PWD to obtain police permits to step outdoors during lockdown for a change of environment, which was otherwise not allowed for citizens and residents. Virtually, a social media group consisting of mothers of PWD also provided Dragana with a community to exchange experiences, worries, and successes, when relevant information was hard to access.

As restrictions lifted in Dubai, the family appreciated returning to a routine that includes in-person schooling, therapies, and social circles. Dragana found that although technology was useful during the pandemic, virtual methods could not replace necessary, person-to-person support for her family.

Perspective from Ireland

Peter, whose sister, Margaret,  lives with IDD and is a Special Olympics Athlete Leader, echoed the prevalence  of isolation in Ireland. For Peter’s family, their strong family foundation became the sole replacement for support systems that were suddenly no longer available due to the pandemic. When Special Olympics practices ceased to take place, Margaret lost her social circle and routine; essential factors for her mental and physical wellbeing.

To maintain connection to healthy habits and people, the family relied on Zoom for personal training sessions, virtual Special Olympics practices and games, and special occasions with extended family members. As Margaret moved out of her group home and back to her family, the ability to go on daily walks within 2 kilometers of her house also connected Margaret to the external environment and provided an outlet.

Although technology played a vital role in keeping the family connected, Margaret and her family cherish physical connections in the new phase of the pandemic due to Margaret’s extroverted personality. These connections include returning to Special Olympics practices and outings with team members.

Perspective from the United States (US)

Lori, a US based mother of a young adult with autism, recalled the isolation, disruption in routine, and lack of resources that the family faced. For them, “everything that happens in the family affects every person,” so the difficulties following autistic daughters’ inability to attend her in-person school to work transition program, weekly social circle, and religious services, negatively impacted the mental health of all family members. Though some programming was transformed to virtual formats, their family faced difficulty engaging with digital material and were unable to find appropriate substitutions. Furthermore, they experienced a lack of health resources specific to their daughter, leaving the family to find their own solutions. For instance, they found that most doctors were not equipped to help their daughter with her phobia of injections and could not guide them towards appropriate resources. This lack of training left them searching for centers that could appropriately prepare their daughter, and led them out of state to receive immunization under sedation.

Time spent outdoors provided an outlet for the family, though others’ resistance to follow mask mandates created anxiety. Following lockdown, it has been difficult to reintegrate back into pre-pandemic structures, such as readjusting to family members leaving home for daily obligations.

However, the family values the return of in-person opportunities, including the chance to re-enroll in a now in-person transition program, which they find more suitable for their daughter to develop skills for future employment and which she finds more engaging.

Universality of isolation for families of PWD amidst COVID-19

The interviewed families of PWD– the largest minority in the world– shared a sense of isolation during the pandemic despite living continents apart. Although the UAE, Ireland, and the US differed vastly in government responses to COVID-19, the interviewed families felt a lack of social connectedness to necessary services and people. These narratives align with global statistics: about 60 percent of parents of PWD in Canada were very or extremely concerned about loneliness or isolation for their children, and twice as many PWD in the UK reported feeling lonely compared to non-disabled persons in the UK during the pandemic.

In the face of social isolation, the interviewed family members assumed dual or compound caregiving roles to provide for their family. Family caregiving was a common, shared challenge for families of PWD during the pandemic, and the challenges were exacerbated by factors such as socioeconomic status, race, age, and other structural inequities.

Although technology alleviated isolation for some families and allowed continued access to essential resources, all interviewed families preferred in-person connections. As restrictions are lifted, studies suggest that mindful and intentional usage of technology, while staying aware of potential harmful effects, could allow us to harness the positive aspects of digital connection .

In this next phase of the pandemic and amidst Disability Pride Month, it is vital to understand that the pandemic is not over for PWD and their families worldwide, who face ongoing harms, interruptions to services, and continued isolation. However, creating intentional communities that include families of PWD can ameliorate the uncertainties ahead.

The views and opinions expressed here are those of the writer, and do not necessarily reflect the official position of SCSC.

Photo by Jonathan J. Castellon on Unsplash