Austerity reform is keenly felt among people with intellectual/developmental disabilities (hereafter intellectual disabilities, or ID) and their families, who continue to face an underfunded and inadequate social services system in Ontario, Canada. Following plans to cut further from the provincial developmental services budget (Jones, 2019), it is critical that we extend our understanding of just who exactly will be asked to shoulder the impacts of these decisions, and what implications this will carry. To address this need, this article outlines the ways in which family relations and gendered forms of unpaid labour are currently structured by developmental services in Ontario, presenting a historical understanding of what we term "coerced relations of care". While we base our discussion in Ontario, this analysis may have relevance in other jurisdictions, particularly those with aging populations where family care responsibilities are increasing, and where social infrastructure is undergoing rights-based reforms.
We address the dynamics generated by unpaid forms of care work from a perspective that highlights, first and foremost, the ways in which Ontarians with ID have been systematically denied critical services that support their right to exercise agency and to direct their own lives. Building upon this premise, we discuss the role of women within the hidden care economy as unpaid and essential caregivers for their relatives with ID. Our analysis considers the role of sisters, engaging key studies around motherhood and disability to fill an important gap in care literature by highlighting the pervasive nature of gendered labour within families that include a member with ID. Over the course of this discussion, we firmly reject the notion that persons with ID represent a burden for their families and instead, maintain that the burden imposed through unpaid care work is created by the denial of services and supports for the individual with the disability. In locating the problem within the policy response to people with ID, we identify the harmful effects of this socially generated burden on disabled people who are coerced into receiving care from relatives, as well as on the women who often carry out this unpaid and invisible work within private households.
As we demonstrate below, many of the negative impacts that result from performing unpaid support work tend to be linked to social systems based on harmful and inaccurate assumptions about persons with ID and their relatives. Such shortcomings can be reframed as consequences resulting from a broader societal failure to recognize the entitlements of people with ID as equal citizens, and to facilitate their inclusion and full and equal participation in society. These negative impacts then are not the result of an individual's disability, but of the socio-political and economic reactions of dominant groups to their identity. Such reactions include the discursive framing of people with ID as "burdens" to their families and related policies that segregate and exclude them. Over the course of this article, we unpack a number of these structural arrangements and address their impacts through an analysis that is attentive to gendered forms of labour, as well as to how critical disability scholars frame related issues of service provision. Similarly, to surface the potential risks to persons with ID, we situate these care relationships across evidence of the many tensions that have arisen between self-advocacy and family-led advocacy initiatives, building on key scholarly work in this area. We explore how the current socioeconomic context of many individuals and families can limit opportunities to develop or adopt potential solutions, and propose avenues for future research to advance knowledge in this area. Our discussion closes with a set of principles and recommendations that will help inform a rights-based approach to designing developmental disability services.
Before we begin, we need to clarify that we are interpreting support work through a feminist approach to the ethics of care that is attentive to both parties in the care relationship (Noddings, 1984; Kelly, 2013). In this article, however, we focus primarily on the position of sisters who are not labelled with an ID. Our overarching goal is to draw attention to why such potentially coercive care relationships are deemed necessary, and to question the degree of choice available to persons with ID and to the siblings who provide them with support. We focus on unpaid care work to show how this practice can be harmful to both parties when care relationships are made necessary by specific socioeconomic arrangements shaped by negative cultural assumptions about people with ID that create barriers to, or fail to facilitate their choice and agency. In this sense, our approach draws upon feminist approaches to disability justice and closely aligns with previous work by Daly (2013), for example. It is thus the forced reliance on essential forms of underfunded support that is at issue here, and it is this political economy of care that we now turn to.
As hidden as it may be, sibling support work has always been a part of modern public dialogues around ID. Unfortunately, however, the inclusion of a sibling labour perspective has not been without problems. Historically, the best interests of presumably non-disabled siblings have been used to denigrate their relatives with ID. Early policy targeting persons with ID in Ontario suggests that the actual or potential care role played by siblings was anticipated and woven into a narrative that framed people with ID as burdens. This is nowhere more evident than during the many decades where the Ontario government funded segregated disability institutions (or regional centres), including Huronia, Rideau Regional, and South Western. The opening of the first – and also the last - of these institutions, Huronia, was announced in 1876 (Parks, 1995, p. 65). Huronia would remain open until 2009 (see Wynne, 2013, 9 December). As Tim O'Sullivan and his sister Maureen explain, Tim, a person with ID, was institutionalized in Huronia after medical doctors advised that this separation "would be better" for Maureen (People First of Canada, 2017). Maureen however remarks that her brother's placement in Huronia was a difficult time and that having her brother in her life was not, and is not, a burden, but a benefit (People First of Canada, 2017). As we unpack the gendered and unpaid care roles of women, it is thus important to highlight that the "burden narrative" was used as justification for the institutionalization of people with ID (Meltzer & Kramer, 2016), and that relatives were often pressured by professionals into making these decisions (see, for example, Radford & Park, 2003; Burghardt, 2014). The confinement of people with ID and the many forms of violence this exposed them to ought to be placed within broader public health initiatives purportedly aimed at "saving" families from the supposed pathology of disability. Key to these discussions were the assumed detrimental economic impacts that the presence of disabled persons was believed to generate.
To understand the history of underfunding developmental services in Ontario, we must thus consider the general social status of people with ID, broader ableist ideologies, and the devaluation of care work. Beginning with current perceptions of ID, the burden narrative remains prominent and continues to attribute negative impacts within families to people with ID. As noted by Stoneman, "[c]onceptual models of families too often view children with disabilities as stressors rather than as family members" (2005, p. 347). Where evidence has challenged this model by pointing to the benefits of having a sibling with a disability, positive results were still interpreted through a lens of pathology: "[t]hose seemingly positive findings must be caused by guilt experienced by the siblings that inhibits their expression of negative feelings" (Stoneman, 2005, p. 347). In addition to generating tension between the needs of siblings and people with ID, these pathologizing frameworks disregard alternative and more complex views of ID in order to reinforce the low social status of those who carry this diagnostic label.
A case study attentive to age-based cohorts further demonstrates how perspectives on sibling relationships held by caregivers can fluctuate based on contextual factors that are independent of the individual with ID. Mauldin and Saxena (2017) found that siblings aged eighteen to twenty-five were more likely to report providing direct care to their disabled sibling, and that this cohort mentioned more often than other age groups that their sibling with ID enhanced their lives. However, these siblings also expressed anxiety about the care responsibilities they would inherit once their parents became unable to contribute. Thus, Maudlin and Saxena stress the importance of adopting a life course perspective to understand "life course shifts in experiences and concerns" (2017, p. 2258).
Although Disability Rights Movements have had considerable impact in promoting the formal recognition of the rights of disabled people and in shifting cultural understandings of disability, substantive changes embodying these frameworks at the policy and program level have yet to be realized for people with ID. This in turn contributes to the ongoing privatization of disability support needs and the reluctance on the part of government to invest in and address these needs. The effects are harmful, first and foremost, to the person with ID, who is left with no choice around who will provide them with critical and intimate forms of assistance. As previously noted, the lack of options and access to adequate and appropriate paid supports can lead individuals to rely on unpaid family members–most often women–who are in turn pressured to provide the support. At the same time, the person with ID may be forced to accept care from family members who could severely limit their autonomy. As will be discussed towards the end of this article, when family members do not share the same values and priorities, the individual with ID's opportunities for self-determination can be undermined (see, for example, Foley's (2012) discussion of parental denial of sexual agency, as well as Spagnuolo & Boulanger, 2018). The coerced nature of these care arrangements can also predispose caregivers to certain risks, which we will discuss further on as well. To summarize, while uneven power dynamics are present in all relationships, these can create unhealthy and even dangerous situations that directly undermine individual rights when the provision of care is both essential and coerced, and when there is no prospect for alternative arrangements for either party.
For the women who perform unpaid support work in private households, there are also material risks. Again, and contrary to what the "burden narrative" suggests, many of the well-documented impacts of unpaid care work, such as poverty, poor health and unemployment (United Nations, 2019), are not the inevitable result of disability or caring for a person with a disability. Instead, these impacts directly stem from the failure of government to recognize and respond to the critical support needs of people with ID, and to recognize the value of care work. Along these lines, we can more helpfully frame the consequences of unpaid care work through a critical feminist reading of disability that recognizes historic struggles around co-existing claims to rights. It is this more nuanced framing that allows us to assess the situation of unpaid and gendered labour without perpetuating oppressive narratives that denigrate people with ID as "problems" for their families to manage, or simply as passive recipients of care.
Existing critiques of women's position in the disability care economy have not yet focused on the role of siblings, but this broader research into care is nevertheless relevant here. First, evidence around the role of women in disability care work provides us with a basis for exploring the expectations and assumptions that shape sibling care relationships through a gendered lens of analysis. Especially helpful to our present discussion is Kittay's (1999) insight that the mothers of people with ID have been viewed as being "at fault" for their child's impairment (p.176; see also Ladd–Taylor & Umansky, 1998). Such allegations are eugenic in nature as they are premised on a rejection of people with an ID as complete humans worthy of social and economic support (for more on the perceived "sub–human" status of people with ID and related socioeconomic implications, including their subhuman treatment, see, for example, Ferguson, 2004; O'Brien, 2013; Malacrida, 2015; and Spagnuolo, 2019). Framing individuals with ID as "problems" that have been unfairly forced upon society also shifts responsibility towards their mothers, who are positioned as the cause of the imagined problem. From this practice of "mother–blaming" flow broader sets of social norms that work to make acceptable the unpaid care work performed by women on behalf of the child or adult with ID. In tracing these dynamics, we can begin to appreciate how the implicit acceptance of disability and disabled people as a "problem" operates not only to disenfranchise those individuals, but also to bolster the gendered and familial dimension of disability care work and along with this, the undervaluing of disability care work as a form of labour.
The lack of social and economic recognition for care work is a testament to its undervaluation. As West has shown (2002), women are unprotected by the law throughout the years during which they provide care to family members. In fact, he claims that these women "enjoy no rights of support" (p. 91). Further evidence suggests that reliance on the unpaid labour of caregivers has actually been incorporated into the developmental services sector in Ontario. Saaltink and Ouellette-Kuntz (2014), for example, summarize relevant research and then draw upon their own interview data to demonstrate that families serve as "system navigators" (p. 53). Unpaid family members work as administrators, advocates, and researchers who gather information about services, and manage the people, paperwork and other tasks–in addition to playing a direct caregiving role. The authors recognize the role of gender in these care relationships, and it is worth restating that it is often mothers and sisters who are expected by government agencies and society at large to provide this unpaid labour for their relatives. In turn, individuals with ID are given little choice around whether they receive support from these women. More recent Canadian survey data, explored in detail below, reinforces these observations.
As previously suggested, there has yet to be significant scholarly engagement with the position of sibling care workers, despite the impactful nature of these relationships. The existing literature does however present a strong case for addressing sibling relationships in more detail. Particularly important is the finding that siblings often feel a sense of responsibility for the future of their relative with ID, with many expecting to be involved in supporting them or caring for them in the future (Leane, et al., 2016, p. 37). Indeed, many siblings have spent much of their life anticipating that they will eventually be assuming a greater supportive role for their sibling with ID (Heller & Arnold, 2010). While eight out of ten indicated being comfortable with that role, many did not feel financially or emotionally prepared (Ipsos, 2012, p. 7).
Sibling caregiving can include a variety of tasks that may require varying levels of expertise, as well as differing emotional, financial and time commitments. According to Hall & Rossetti (2018), siblings assume "the specific and distinctive role of caregiver, friend, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner, and informal service coordinator" (p. 2). Many siblings become trustees, guardians, advocates, or co-residents. Siblings can also play the role of social convenor; personal and physical care provider, which may include physical tasks such as providing support with dressing and personal hygiene; independent living support; employment support; medical advocate; financial steward; counsellor; employer; and friend, to name but a few examples. Regardless of their specific duties, when siblings do become caregivers, knowledge transfer and training is not always possible. Some siblings may have access to parents - often mothers - who are capable of sharing information and explaining some of the routes into the complex provincial developmental services system. Others, whose parents may be ill or have passed away, for example, could be forced to learn independently, on short notice, and during a potentially difficult period of their lives involving grief and family loss, knowledge that their parents may have taken decades to acquire. Like their parent caregivers before them, siblings typically receive and collect information accidentally and haphazardly, chasing social services and rumors of funding opportunities, and trying to find the right keywords and knowledge that activate certain supports.
It remains the case that adult siblings without ID are increasingly taking on new responsibilities (Sonik et al., 2016; Heller & Kramer, 2009) that go beyond the roles expected of siblings of individuals without disabilities. The role of sibling caregivers can become intensive, complex and long-term, and it can intersect with other roles and responsibilities in different ways, at different times (Schultz & Eden, 2016). These other roles are also more likely to be caregiving (Burke et al., 2018; 2012; Heller & Arnold, 2010) and supportive roles (Arnold et al., 2012). Further evidence from Heller and Arnold (2010) found that many siblings planned to become caregivers for their siblings with an ID. However, a review by Lee et al. (2018) found that specific responsibilities differed across studies and could, for example, include living with a sibling, supporting them financially, or serving as their guardian. Despite its prevalence and normalization, Hodapp, Glideen and Kaiser (2005) found that sibling care work and the needs of caregiver siblings tends to be overlooked (Hodapp, Glidden, & Kaiser, 2005).
There has been mixed recognition that the nature of sibling support work is deeply gendered. Overall, our survey of the literature points to evidence that demonstrates the particular and coerced reliance on sisters. So, not unlike their mothers, it is more likely to be sisters who find themselves becoming "accidental activists" (Panitch, 2008) and caregivers for their siblings with ID. In Lee and Burke's (2018) systematic review of caregiving roles of siblings of adults with ID, there was some indication that women were more likely to adopt a caregiving role. However, the involvement of brothers increased if the sibling was also a brother (Orsmond & Seltzer, 2000, in Lee & Burke, 2018). According to this same review, only Cuskelly's (2016) study found no significant relationship between gender and caregiving roles. Further, they found that current caregivers tend to be older and to have a good relationship with their sibling. It has also been noted that caregiving siblings are more likely to be single, less educated, earning less income and receiving public benefits (Lee & Burke, 2018).
Important to our present discussion is a unique cross-Canada survey conducted by a grassroots group of adults who have siblings with an ID (Goll, Ries, & Rossi, 2018). This data collection initiative advanced sibling issues on a national scale for the first time with the launch of a survey and a subsequent report summarizing results. The survey data, which draws mostly on respondents living in Ontario, shows that along with their advocacy work, siblings of people with ID often take on unpaid care responsibilities in the private household (Goll, Ries, & Rossi, 2018). To better understand the unique situation of sisters of people with ID, evidence from this survey ought to be read alongside established and better-known evidence on gendered care labour that tells us that women still make up the majority of the often hidden and undervalued workforce that characterizes the care economy (Keefe, 2011; Sinha, 2012; Fast, 2015; Battams, 2017; Armstrong, Armstrong, & Scott-Dixon, 2008). This economy includes both unpaid work performed in the private household and paid work performed in the care sector (for a popular definition, see the International Labour Organization, 2018, p. 1).
It is important to note that in Canada, paid care work, which is "characterized by poor pay and bad working conditions" is mostly performed by women, and much of it by women of colour who are also migrants (Canadian Labour Congress, 2019), demonstrating the deeply racialized dimension to care work. Further research within a Canadian context tells us that women who support people with ID are at high risk of poverty, poor health, and other social problems (Ireson et al., 2018). This is especially true when women are unpaid and are part of the same household as the individual they support. Evidence shows that the loss of formal, paid employment is a serious risk with cascading financial and health effects. As Fast (2015) explains, "[t]hose who provide many hours of care, who reside with the care recipient or care for someone with a cognitive disability are more likely to quit their jobs, and they may even be fired. As such, they are at greater risk of experiencing poor social, economic, physical and mental health outcomes" (p. 1).
In a separate study, Fast, Keating and Yacyshyn (2008) found that women caring for people with ID run a particularly high risk of leaving paid employment to continue in their care role. Given Goll, Ries and Rossi's (2018) conclusion that siblings often perform unpaid care work, further research is needed to track how the financial and health-related risk factors identified by Fast (2015) and Fast, Keating, and Yacyshyn (2008) manifest in this population. In an initial effort to address these gaps, Fast (2015) shows that as siblings age, they are more likely to be living together (p. 9)–an arrangement that would place them at a much higher risk of financial and health-related inequities. Siblings surveyed by Goll, Ries and Rossi (2018) also report significant concerns regarding finances, housing security, and the mental health of their parents, siblings, and themselves (p. 12).
Threats to safety, stability, and quality of life often require sibling carers to adopt an advocacy role; this is not dissimilar from what Saaltink and Oullette-Kuntz (2014) have described in their discussion of parents navigating Ontario developmental services. Similarly, a study by Carey, Block and Scotch (2019) documenting the organizational involvement of parents of disabled people in formal advocacy positions, emphasizes the high degree of overlap between parenting and activism, even when the outcomes of this involvement do not always support the empowerment of disabled people. Leaving aside these impacts for a moment, it is clear that the invisibility of advocacy work that is both direct and systemic is easily overlooked, especially when compared to direct or physical support work that involves more intimate forms of care. Relatedly, emotional labour constitutes an especially hidden dimension of gendered labour that caregivers, as well as those they support, often perform. Runswick-Cole (2013), for example, explores this form of labour among mothers and their children, showing how the need to regulate and perform certain emotions is an intrinsic part of the caring relationship. Foundational literature around emotional labour has also established this as a highly gendered and hidden aspect of care work (Hochschild, 1983).
Experiences around emotional labour, advocacy, and unpaid work are also closely related to expectations of volunteerism and the unequal sharing of community-based knowledge. Along these lines, disabled people have pointed to the ways in which they are called upon to share their lived experiences and expertise without payment or compensation (Harrison et al., 2001, p. 63, cited in Walmsley & Johnson, 2003, p. 114). Similarly, sibling caregivers and parents in care roles can be treated as sources of valuable information about people with ID, and relatives can be asked to speak on behalf of individuals whose own potential for self-representation is overlooked or unsupported; they can also be asked to share expertise and advise decision-makers, but often without compensation. The question of compensating caregivers who give input was a "hot topic" in 2015, and a report on the question of "whether to pay patient and caregiver participants, as a form of recognition" received wide interest in Canada and internationally, indicating a promising improvement in this area (Change Foundation, 2015). This movement towards fair compensation for the experience-based expertise of disabled people and family caregivers helps address some of the inequities around disability and gendered labour, and ought to be continued.
To avoid many of the risks discussed so far, including those inherent in familial care relationships, we need first to establish a right to supports for people with ID. The continued absence of such rights exists within a context where the more fundamental principle of entitlement to support has not yet been realized for people with ID. A report by ARCH Disability Law, an Ontario-based disability law clinic, summarizes the many failures of the legislation governing developmental services in this province, suggesting that it is this lack of an entitlement-based approach that results in the systemic failure to include people with ID in society (Joffe, 2010).
The argument so far has been that the developmental disability services system relies on a family structure centred on the unpaid labour of mothers, and in turn sisters, to prop up an unsustainable, underfunded and inefficient system. This structurally imposed burden is nothing new and, as Panitch (2008) has highlighted, many families, and especially mothers, became "accidental activists" as a result. Families have certainly contributed in significant ways to the development of supports and services for people with ID but, as indicated below, their contributions have not been without problems. The systemic failure of the provincial social service system was noted by Simmons in 1982, where he remarked that lengthy wait lists have long been a part of policy related to people with ID in Ontario. This has certainly been the case since the early 1900s when what was known as the Orillia Asylum for Idiots was the only publicly funded and specialized form of support available in the province. The system, according to Simmons, has always pressured families to use their own resources, rather than rely on public support. In his words, "[w]henever possible, patients or their relatives were expected to contribute to their maintenance expenses while long waiting lists acted as a further deterrent to use" (Simmons, 1982, p. 169). Simmons' findings are consistent with a more recent study that points to the significant contributions made by parents and specifically, to "assumptions that parents can and should contribute substantial time and effort contributing to the desired outcomes for their adult children [and how these] may underscore service acquisition processes as well" (Saaltink & Ouellette-Kuntz, 2014, p. 45).
The relocation of services for people with ID from the Ministry of Health to the Ministry of Social Services in the 1970s played a role in ensuring that many of their supports would not be included in the creation of universal healthcare for Canadians. Instead, and as many other public services changed, these disability supports remained locked into a much older, residual approach to social policy. Simmons is once again worth quoting here: "as regards institutional care, and especially community care, [ID] policy in Ontario would [continue to] be based on the residual, selectivist principles which have always characterized welfare policy" (1982, p. 170). The trend of relying on unpaid family labour was reconfirmed in 2016, when the Ombudsperson of Ontario released a harrowing report entitled Nowhere left to turn. The report highlights a chronic lack of supports for families and calls for an overhaul of the developmental services system. In addition to other key observations, the Ombudsperson recognizes that an adult with ID is at high risk when their unpaid primary caregiver (e.g., family member) is unable to continue providing care that is essential to the individual's health and wellbeing. The result, according to the report, can be a quick descent into crisis. In this context, crises include the risk of abandonment, abuse, homelessness and even death, without stable, dependable and consistent supports (Ontario Ombudsman, 2016).
What is known as the "family movement" has sought and continues to seek new ways to secure and enrich the lives of people with ID, as well as to meet their ongoing and evolving support needs. As part of the family movement, volunteer groups of family members with little to no financial resources have used their collective creativity and ingenuity to create grassroots solutions to the problems and crises they face due to the lack of adequate support for their relative with a disability. Siblings Canada is one such initiative. Created by and for siblings of people with disabilities and with no initial funding, Siblings Canada has over time built up a variety of supports for siblings: a curated library of relevant resources, peer support programs, mental health workshops and learning opportunities. These initiatives are seen as innovative, accessible and in some instances, have become embedded within the social services system and proposed as a viable solution.
New and innovative arrangements aimed at distributing care work also present opportunities to develop service standards and measures of performance that are both relevant to individuals with ID from a human rights perspective, and informed by feminist labour considerations around assumed unpaid work. At the time of writing, little research has been done on the short- or long-term impacts of some of these arrangements, but this will nevertheless become an important area for future study. If and when these close studies are conducted, it will be important that they assess the extent to which new solutions inadvertently rely on the ongoing emotional, social, and financial investments of families. When the creation or maintenance of new arrangements requires a heavy investment, this added burden of responsibility risks compounding the already intensive and unpaid labour of families.
One such alternative support arrangement involves the creation of an unpaid personal support network. A personal support network has a spectrum of variations and for some families, consists of a loose group of people concerned for the wellbeing of the person with an ID. The group may come together on a voluntary and informal basis for social events and other occasions. At the other end of the spectrum are formal and more complex arrangements that have legal roles such as trustee or power of attorney who, in some jurisdictions, manage funds (Nunnelley, 2015). Whether simple or complex, formal or informal, new networks tend to require a family member–most often a mother or a sister–to pull from her peer group or community to make up the network membership. Leading segregated lives results in people with ID being socially isolated, meaning they will have very few important relationships to draw upon when building personal support networks (Clement & Bigby, 2009; Lippold & Burns, 2009; McCausland et al., 2018; Wormald et al., 2019). As a result, family members and caregivers often end up selecting from their own relationships to make up the membership of a network. The resulting network may not necessarily consist of people whom the person with ID–the individual at the centre of the network–would choose. Similarly, the person with ID may wish to select members who could not support the function of the network. This limitation of choice can potentially undermine the person's right to independence, decision-making, and self-determination (Joffe, 2010).
Personal support networks, both formal and informal, may be immensely valuable for some individuals with ID and their families. There are however questions that should be explored in more detail as part of future work to evaluate the effectiveness of these approaches. One of the first questions has to do with the feasibility of establishing new care networks. Personal support networks may require the ongoing organizing labour of creating opportunities for members to connect, as well as efforts to maintain the interest of the network in the person with ID. To meet these ends, the women pulling together these circles could potentially feel obligated to reciprocate care to the members of the circle, consequently expanding and even further intensifying her unpaid care duties. As one sister says of creating networks, "[t]here are no free lunches in this world, I would go overboard looking after the friends that were part of our life. I had to put a lot of energy into befriending my friends" (Siblings Canada, 2019). Under current social arrangements, where many women are engaged in paid employment and managing one or more jobs, and where caregiving is largely viewed as "women's work" and expected to be provided in one's free time (Nedelsky & Malleson, 2023), it may not be possible for mothers and sisters to undertake new networking initiatives. Furthermore, the potential to build a new network is often shaped by different forms of access and privilege, such as having established connections and resources, which can, in turn, be shaped by privilege related to level of education and class, as well as non–disabled privilege and white privilege, for example. In sum, formal and informal networks may not be attainable for everyone in the current socioeconomic context where, as Nedelsky and Malleson (2023) emphasize, care tends to be divided along gendered lines with paid employment occupying much of adults' lives, leaving little time for care.
To support individuals with ID and their families in making informed decisions, it would be instructive to assess the return on investments of time, money, and labour against the desired outcome of long–term security and an enriched life for a relative with ID. The potential life expectancy, for example, of personal support networks could be considered in future studies, alongside factors impacting a network's life expectancy. Along these lines, a sister who spent over 20 years nurturing a network around her sister remarks upon its fragility, sharing that, "after all these years and all those people, there are only one or two people still involved in her life and they are my two closest friends" (Siblings Canada, 2019). In today's social and economic climate, where many women are working full–time, bringing up children (sometimes in partnership, sometimes alone), caring for elders, contributing to community, and meeting other pressures, sibling caregivers may need to carefully assess how they will invest any available financial as well as emotional resources. To meet the needs of individuals and families experiencing a low margin for risk and to assist them in making informed decisions, it would be practical to focus on generating evidence supporting predictable, concrete outcomes. In addition to exploring the outcomes and impacts of new and promising approaches, there is also a clear need to revisit and rework the fundamental support systems that structure disability care relations and generate coerced forms of gendered labour. The processes employed in this redesign effort should centre those with lived experience and be equally attentive to the dynamic tensions that can exist within families, as discussed in the next section.
Family participation in provincial disability policy reform has been both invited and uninvited. Just as families have been active in developing and implementing stopgaps in response to the systemic failures in developmental disability services, they have also played a prominent advocacy role through collective political organizing. While this role has supported change, it has also generated a number of challenges. Addressing this point, Carey, Block and Scotch (2020) document important tensions between organizations led by disabled people, and those led by parents. The authors suggest that family–led advocacy can even be detrimental, as "the political power of parents is also a potential threat to disability rights activities insofar as parents undermine and oppose disabled activists" (p. 152). In this section, we summarize some of the tensions that have been identified in relation to disability advocacy, in order to encourage reflection on the risks and possibilities associated with sibling allyship and the recent rise of a visible sibling movement.
The parents' movement in Ontario is said to have been sparked by an unsigned letter sent to the Toronto Daily Star in 1948, pointing to the lack of educational opportunities for children with ID: "There is no school for such (backward) children, no place where they could get a little training to be of some use in the world, only Orillia which is always full" (Anglin & Braaten, 1978, p. 6). This letter, written by a grandmother raising her eight–year–old grandson, moved a father to publish an invitation for parents to meet to discuss the situation of their children. In less than two months, 70 people met at a church to talk about their children. During this meeting, they resolved to urge the Ministry of Education to provide educational opportunities to "retarded children" of all ages (Anglin & Braaten, 1978).
In the post–war era, women were expected to privately manage their household and care for their children–not demand that public funds be used to support their "backward" children. Mothers compelled to fight for their child's well–being were certainly playing outside their expected role (Panitch, 2008). Given this context, it comes as no surprise that men often served on the board of directors of newly formed parents councils, while mothers worked in the background mailing letters, selling baked goods to raise funds, filling in when teachers were unavailable, organizing preschool classes in their living rooms, among other tasks. Due to the often hidden and unseen labour of these mothers, a strong national network of parents' councils was formed and effectively got things done (Panitch, 2008). The gendered division of labour was also observed in other organizations like the March of Dimes' Marching Mothers campaigns (Galer, 2018).
Yet, parents and self–advocates did not always agree on the best approaches to advocacy, nor on sensitive topics such as sexuality and reproductive rights. As Carey, Block and Scotch (2019) found in their comparative review of a sample of parent–led and disabled person's organizations in the United States, alliances between these groups can be tense, with significant variation and a number of factors influencing potential collaboration. As such, "[a]ttempts to analyze 'the parent movement' as a single, coherent movement, therefore, are too simplistic to represent the actual range" (Carey, Block & Scotch, 2019, n.p.). Nevertheless, some researchers have found that signs of tension between the broader parent movement, which was constructed for disabled people, and organizations of disabled people mobilizing for their own rights, emerged during the mid–70s. Commenting on this period, Galer (2018) describes how the clash arose, as an, "[a]rising tide of disability rights activism blamed overprotective parents for their unwillingness to relinquish control to disabled consumers" (p. 36). Galer also found that "the charitable approach" and partnerships undertaken by parent organizations clashed with self–advocacy movements (p. 53).
Contrasting parent–led movements with self–advocacy groups, Carey, Block and Scotch (2020) argue that we cannot negate the positive and empowering role played by some parents in supporting family members and forms of self–advocacy behind the scenes, such as "providing transportation, assisting in preparing and delivering speeches and co–presenting" (p. 172). Yet they also caution that parent groups can work to disempower self–advocates (p. 152). The history of the People First movement, an international movement led by self–advocates with ID, speaks directly to some of these distinctions. The origin story of this movement, as described by the organization, traces their beginning to Sweden in 1968, where persons with disabilities reacted to a group of parents' intent to represent them and took action to articulate their own needs: "[…]when a Swedish parent's organization for children with developmental disabilities had the motto: 'We speak for them.' The disabled people at the meetings decided they wanted to speak for themselves and made a list of changes they wanted made to their services" (People First New Zealand, n.d.). What is clear from this example, as with Carey, Block and Scotch's (2020) book dedicated to the topic, is that families have not always played an empowering role in the lives of people with ID.
Indeed, self–advocacy movements emerged around these very tensions between individuals with ID and family caregivers, and this history must be remembered as family care relationships are reimagined. Similar tensions can also arise as siblings take their place in the service and advocacy landscape. There are indeed risks within all relationships that are shaped by coercive care, and being a sibling does not necessarily minimize the risk of recreating the same patterns that exist between parents and self–advocates with ID. However, the sibling relationship is notable for having the potential to be one of intimacy and allyship, rather than dependence and paternalism. This is especially true when we consider the greater equality that can exist between siblings as a result of their shared position within the overall structure of the family. While additional research in this area would be beneficial, it is clear that to foster these and other opportunities for solidarity, we first need to address the coercive nature of care work, and replace this assumed and unpaid care role with entitled supports based on the principle of greater agency and choice in care for people with ID.
Decisions to provide and receive unpaid support in all its varied forms, from direct care work to advocacy, to the sharing of expertise, are complex. These choices can be structured by coercion (Nedelsky & Malleson, 2023), as well as by more positive motives. Yet regardless of the forces at play in bringing about and shaping support roles, caring relationships can lead to oppressive as well as positive experiences for disabled people. Feminist disability scholars have rightly pointed to the limitations and dangers inherent in many (gendered) caring relationships (for an excellent summary, see Herring, 2014); this is also the case when limited funding and service options leave disabled people with little choice but to turn to relatives–despite the many risks this may pose. These coerced relationships can indeed carry harmful consequences for disabled people. At the same time, research into disability and the ethics of care points out positive possibilities and spaces for caring (Daly, 2013; Kittay, 1999; Kelly, 2016; Nedelsky & Malleson, 2023). For relationships to flourish, the choice to give and to receive caring support is one that ought to be valued, but never imposed or coerced by necessity and a lack of choice.
In this closing section, we highlight the importance of agency, expressed as the exercise of choice, as an important mitigating force against some of the tensions and risks associated with sibling relations outlined above. For people with ID to exercise choice, they must first have access to individually–tailored supports and services that meet their needs; this policy would be designed with the goal of ensuring lifetime entitlement to sufficient support for people with ID, unencumbered by the changing priorities of provincial government. The United Nations Convention on the Rights of Persons with Disabilities is very clear about the types of supports to which disabled people, including those with ID, should have access. Article 19 – Living independently and being included in the community in particular provides a detailed description of what is expected by governments who sign onto the Convention:
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in–home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
In Ontario today, funding for people with ID is based on the inclination of the provincial government to assign dollars, and there is no protected right to supports and services. Furthermore, budgets are often assigned to service agencies who have the flexibility and discretion to reassign money to other areas as they see fit. The possibilities for fostering choice are thus profoundly limited by fiscal constraints. Decision–making and policy design processes are equally as important as budgets when it comes to supporting agency. In this regard, identifying the barriers and the conditions that either hinder or facilitate choice in supports requires the participation and expertise of those directly impacted. Notably, self–advocates with ID and families have advocated for regular consultation with the provincial Ministry on policy development (ARCH Disability Law Centre, R. Lattanzio personal communication to Hon. T. Smith, 2020, 30 December [letter]; Disability Advocacy Network of Eastern Ontario, et al., letter to Rupert Gordon, 2021, 26 January [unpublished open letter]), but this has yet to materialize.
Choice in disability supports also implicates the location in which those supports are received. In other words, housing is a key part of the equation. In order for people with ID to have meaningful choice in housing, they also need an adequate income that would raise them above the poverty line. According to Statistics Canada, $22, 801 per year was the Low Income Cut–Off in 2021 for a single person living in a city with a population of 500,000 and over (Statistics Canada, 2021)–a far cry from the current provincial social assistance rates for disabled people. One of the many benefits of having access to an adequate income could potentially include a reduction of the five to fourteen year wait lists for municipal social housing (Vallis, 2023; Glowacki, 2020); for some, it could reduce the need to move into a group home, or live with parents or siblings–unless, of course, an individual prefers one of those arrangements.
The freedom to choose where and with whom one lives is also dependent upon accessing appropriate and sufficient human support on an everyday basis. This is in line with calls for an entitlement–based system of developmental disability supports where funding is assigned to the person with an ID based on their actual support needs. Under this model, each person's budget would be personalized, fully transparent, and autonomous. Each person would have control over their individualized budget, access to supports for decision–making, and the choice to manage that budget themselves, with access to an independent professional or agency for assistance, if needed. Under this model, individuals would know how much money is available in their budget and they would have the choice to manage the funds themselves, with support, or to ask another party to manage the funds under their direction.
Ontario may draw inspiration from jurisdictions such as Australia, where the National Disability Insurance Scheme was introduced to help secure the right to supports for people with disabilities, including people with ID. Here in Canada, under Medicare, there is an assumption that all citizens are entitled to basic health care. When we broaden essential care beyond medical services, basic care for some includes direct support to get out of bed, to dress, to cook, to clean, and to plan social, educational and professional activities. These are not luxuries, but are among the many routine activities that individuals undertake on a daily basis. However, because they are perceived as a burden on society, there remains much public and political reluctance to provide resources to people with ID to realize these basic living standards. Nevertheless, governments must follow through on their responsibility and promise to people with ID, in accordance with the Convention on the Rights of Persons with Disabilities, to deinstitutionalize and support good lives in the community.
As the many risks identified throughout this article suggest, reliance on the unpaid labour of mothers and in turn sisters is not only unjust, but unsustainable. Alongside solutions such as an entitlement–based system of provincial developmental disability and income supports, are potential reforms to care work. Nedelsky & Malleson (2023), for example, argue for a radical culture shift surrounding the gendered norms of care, where care is revalued and where those making policy decisions have on–going lived experience in providing and/or receiving care. This article has outlined some of the impacts of coerced care on siblings involved in unpaid care work, while demonstrating the many benefits of shifting towards an entitlement–based approach to provincial developmental disability services, a revaluation of care, and instituting changes that are based on the meaningful participation of people with ID and their trusted allies in policymaking.
As the Canadian population continues to age, waves of sisters moving into unpaid caregiving roles can testify to the enormous personal sacrifices required to prop up an otherwise unstable, underfunded, and inefficient developmental services system. Data collection and qualitative research into sibling care work and the hidden and deeply gendered assumptions that create so many risks in the lives of people with ID will provide further evidence for modernizing developmental disability services, and for getting it right. What has become clear over the course of our preliminary analysis is that designing systems that ensure adequate and appropriate supports for people with ID can reduce and even eliminate many costly risks, while maximizing the potential for siblings to serve as allies to persons with ID. Offering persons with ID greater choice over who provides their care promotes agency, reduces the negative effects associated with coerced, gendered and unpaid care work, and supports a much–needed positive shift in cultural perceptions of people with ID.