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Alexe Bernier,
PhD Student, School of Social Work, McMaster University, Canada

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Marissa Blake,
Respecting Rights, Canada

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Rainbow
Hunt

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Sue Hutton
ARCH Disability Law Centre

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Palma
Infusino

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Donna
McCormick

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Farrah
Sattaur

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Ann Fudge Schormans
Associate Professor, School of Social Work, McMaster University, Canada

COVID-19 at the Intersections of "Social Work", "Woman" and "Disability": Kitchen Tables, Advocacy and Activism

In the early months of 2020, as the coronavirus (COVID-19) pandemic disrupted lives across the globe, we collectively experienced drastic impacts on the ways that we were able to engage with people around us. For those with access to technology, much of our personal and work lives shifted to the virtual world and social work was generally expected to do the same. In Canada, from where we write this, Zoom meetings and other electronic communications swiftly replaced in-person contact. Social workers, service-users, service providers and governments were required to shift to new and creative ways of working. This has not been easy, nor has it always been successful. And some communities have been more significantly disadvantaged than others: women and persons labelled/with intellectual disabilities are two notable examples (Stienstra et al., 2021; UN, 2020).

We are a group of women who have come together to reflect and write about our experiences as women – with and without disabilities – living through the pandemic. Our perspectives are those of five self-advocates (persons labelled/with intellectual disabilities engaged in (self) advocacy and activism), a social worker, a social work educator and researcher, and a social work student. Critically reflecting on the past year, we point to how the pandemic has impacted the lives of disabled women. We share as well the ways some self-advocates are building community and advocating on behalf of themselves and others, as well as their ideas for how social workers might better support them moving forward.

COVID-19 project

COVID-19 has drastically and disproportionally impacted the lives of women with and without disabilities (UN, 2020). In social work, a profession dominated by women, we have found it to be a struggle to move work rooted in personal connection and relationship building into online spaces. For women social workers with children (as for other working mothers) (UN, 2020), the transition to predominantly online work has meant scrambling to provide educational support for their children in virtual school while simultaneously performing social work duties from the kitchen table. For Sue (social worker), life as a single mother in a small home saw her young teenage child being exposed to discussions with groups of self-advocates (with their permission) as they were happening on the screen at the kitchen table. This allowed for relationships to develop in new and interesting ways, and created new opportunities for Sue to have important discussions with her son about the work of the self-advocates. Alexe had moved across Canada to begin her doctoral studies, finding herself in a new city with no family nearby, no community and no mechanisms by which to build one. She struggled to build connections with others in her program and new community, and her social work practice was put on hold. For Ann (social work educator and researcher), having to quickly learn the technology required to teach online has been time-consuming. Supporting students who are feeling stressed about online learning, lack of contact with peers and instructors, and other pandemic related worries, means teaching requires more time and attention. Similarly, finding new ways of conducting community-based research given pandemic safety protocols has been difficult. Like Sue, all of this is further complicated by being a parent.

Self-advocates have been impacted more severely. Most common amongst their experiences are worries and uncertainty stemming from drastic shifts in life and routine, experiences of social exclusion and isolation, and the inundation of sometimes conflicting information about a virus that none of us understood. Marrisa highlighted the difficulty in finding information about the pandemic that was conveyed in plain language and how this contributes even further to feelings of "not knowing," worry, and anxiety. Rainbow is both angry and made anxious by the challenges encountered in reaching out for information and support: "no-one answers the phone, they tell you to leave a message but no-one calls you back." Struggling to pay her rent, Donna was placed in a precarious position when workers did not respond to her phone messages. She is frustrated with inaccessible websites, unable to easily connect with workers given social distancing safety guidelines. The heavy reliance on online modes of communication disadvantages many people with disabilities who lack access to technology, supports to learn and use technology, and/or affordable internet access. Television and online communications often fail to attend to issues of disability access (Stienstra et al., 2021). Now that there is talk of a potential "third-wave" and a complicated and poorly communicated vaccine rollout plan, Palma and Rainbow feel additionally worried as they look towards the future. For Donna, it is becoming 'just too much'.

Disruptions to regular routines have dramatically limited access to supports and services. Farrah discovered that the technology she was required to use for online schooling did not suppport closed captioning. This necessitated a support person sitting beside her and translating the lecture material, making her dependent in an area she had previously managed well on her own. Unable to visit agencies, community drop-ins and food programs, or meet with family or other support persons, many needs are left unmet. Donna and Rainbow experience food insecurity. Rainbow shared "there's not that many things out there that can support disabled women to survive the pandemic." Many self-advocates live alone and experience even greater social isolation than before the pandemic (Stienstra et al, 2021). Workers may be restricted from visiting, or have added work demands on their time. The self-advocates spoke to missing important social connections, relationships that nurtured and sustain them, and shared that physical and mental health are affected.

Farrah and Palma noted how women were less able to attend to their physical appearance in ways that were previously available due to the closing of beauty salons. As women with intellectual and physical disabilities, they shared that the inability to maintain a feminine physical appearance detrimentally impacts their mental health. The infantilization and desexualization of women with disabilities is well documented, and includes the ways that disabled women are often perceived as sexually undesirable, as well as equated with being child-like instead of the adults that they are (Santos & Santos, 2018). For Farrah, "beauty is the number one thing to boost my self image."

While disabled women are infantilized and desexualized, they are simultaneously more likely to experience physical and sexual violence, including intimate partner violence, than any other adult group (Balkan et al., 2014). Farrah explained how, as many of us are spending more time at home, this is exacerbated by the pandemic. She pointed to that fact that many women live with their abusers and are therefore less able to reach out for help or support. While barriers faced by women with disabilities in leaving abusive relationships existed prior to the pandemic, social isolation pandemic protocols put disabled women at much higher risk (Ballan et al., 2014; Lund, 2020; Stienstra et al, 2021).

The increased risk of violence cannot be seen as separate from the high level of precautionary safety measures that self-advocates already take in their lives. Marrisa, who uses a wheelchair, prefers to have a female personal support worker (PSW) to assist her with daily tasks. The PSW's role is incredibly personal, assisting people with intimate care needs, such as dressing, bathing and toileting. During the pandemic, however, securing regularly scheduled female PSW's has been difficult. There are fewer PSW's available and as a precaution to minimize risk of infection, they are often unable to travel between locations of employment. Marrisa faces the dilemma of waiting extended periods of time for a female PSW, or having a male PSW provide assistance with these most personal aspects of her life, the latter decision increasing her risk of violence (Ballan et al., 2014; Lund, 2021).

The self-advocates contributing to this paper have responded to these additional challenges by creating their own communities and networks of care. Palma, Rainbow and Donna call and videoconference friends and family to check-in on them and to receive support as well. Building community online has been an important component in ensuring that disabled people are able to connect over their experiences, identifying and working through the unique ways that COVID-19 is impacting their lives, for their own well-being and as a means of supporting others, particularly those living alone. Farrah is actively involved in a community program in which she finds ways to create peer connections amongst members. This includes weekly virtual meetups where people can connect to share tea or make crafts while engaging with others. Marissa facilitates workshops about individuals rights, starting from a place of sharing her own story as a women with a disability. She finds it empowering to help others learn about their rights, contributing to their comfort and safety as people with disabilities navigating the pandemic. Rainbow similarly draws on her experience as a disabled trans woman in her advocacy/activist work (now done online), providing workshops on accessibility, sexuality, mental health and employment to disabled youth identifying as QTBIPOC. Women with disabilities have been stepping up to ensure that their communities and loved ones are taken care of. As Marissa has eloquently stated, "it makes me feel better, knowing that I, as a woman, can make positive change in the world."

It is important to both recognize and emphasize that disabled women have stepped up to support each other in meaningful ways – social workers arguably have a responsibility to support that. In advocacy-focused social work, such as the work the social workers writing this paper engage in, it is vital that we recognize and build upon work that women with disabilities are already doing to support one another. Social workers should be asking women what they need from us and advocating for the centering of disabled women's knowledge, experience and voices in decisions that impact them.

While self-advocates have been bridging gaps between formal services by providing support to each other, during the pandemic these forms of advocacy and activism entail a heavy reliance on technology – something that not all disabled women have access to (Stienstra et al., 2021). Throughout the duration of the COVID-19 pandemic, people with disabilities in Canada have experienced a growing income gap between people with and without disabilities, a decline in secure housing, and increased costs of everyday supplies and services (Stienstra et al., 2021). As we have seen time and time again, people with disabilities are regularly the "left behind of the left behind" (People First of Canada (2020).

Self-advocates see a distinct role for social workers in this sense, suggesting that social workers make efforts to connect people with technology, resources, housing, employment, necessities of daily living and additional community programs. Self-advocates appreciate that social workers have been calling people via telephone if they lack computer access or internet services, but they think that more must be done. More social workers need to make concerted efforts to reach more disabled women so that none are left behind.

References

Ballan, M. S., Freyer, M. B., Marti, C. N., Perkel, J., Webb, K. A., & Romanelli, M. (2014). Looking beyond prevalence: A demographic profile of survivors of intimate partner violence with disabilities. Journal of Interpersonal Violence, 29(17) 3167–3179. doi.org
Lund, E.M. (2020). Interpersonal violence against people with disabilities: Additional concerns and considerations in the COVID-19 pandemic.Rehabilitation Psychology 65(3) 199-205.psycnet.apa.org
People First of Canada (2020) Markham response: Living with care, support, and an intellectual disability during Covid-19. peoplefirstofcanada.ca
Santos, A. C., & Santos, A. L. (2018). Yes, we fuck! Challenging the misfit sexual body through disabled women's narratives.Sexualities,21(3), 303-318. doi.org
Stienstra, D., Grand'Maison, V., Pin, L., Rodenburg, E., Garwood, K., & Reinders, K. (2021). Disability inclusion analysis of lessons learned and best practices of the Government of Canada's response to the COVID-10 pandemic. Guelph, ON: Live Work Well Research Centre. liveworkwell.ca
United Nations UN. (2020, April 9). Policy brief: The impact of COVID-19 on Women. unwomen.org