Growing up with a sibling with an intellectual or developmental disability: Understanding your positionality in the world as a typically functioning sibling
INTRODUCTION
In general, siblings tend to have the longest-lasting family relationship and have the capacity to influence each other significantly (Meltzer & Kramer, 2016; O’Neil & Murray, 2016). However, this relationship becomes more complex when one of the siblings experiences an intellectual or developmental disability (IDD) (Zaidman-Zait et al., 2020). Most of the research surrounding typically developing (TD) children and their siblings with IDD, has focused on challenges associated with these relationships such as worrying about their siblings, adjustment problems, receiving less attention from parents, as well as feelings of jealousy or resentment (Barr & McLeod, 2010). Other research, though, has highlighted several positive outcomes from having a sibling with an IDD, including increased tolerance, understanding, empathy and maturity (Avieli et al., 2019). When speaking to TD siblings, they often recognized the difficulty and the overwhelming feelings they experienced growing up, but that as adults they considered having a sibling with IDD as a positive thing that has influenced the person they are today (Bethany, 2018).
Disability is associated with atypical function as well as slow action, which resonates with the idea that disabled bodies do not fit into society’s parameters of functioning and shows how society views disability as undesirable (Friedman & Owen, 2017). In one study, respondents indicated that disability was socially constructed, with one participant saying that disability was “a consequence of a society’s lack of accommodations for people who are different” (Friedman & Owen, 2017, p. 14). However, due to the relationality and social construction of disability, impairment has a meaningful effect on disabled bodies, and on other bodies as well (Friedman & Owen, 2017). This means that disability is embodied by the person experiencing disability, but also spills over into and between other bodies, such as in the sibling relationship (Friedman & Owen, 2017).
TD siblings exist in the world in multiple ways, where they experience society’s view of disability as abnormal due to their typical functioning, but also experience proximity to disability in a way that others do not, due to having a sibling with a disability (Friedman & Owen, 2017). This paper will focus on the relationship between typically developing siblings and their siblings with an intellectual or developmental disability. It will specifically look at the TD sibling, and how the experience of growing up with a sibling with a disability allows them to position themselves in the world in specific ways. It will be argued that the experience of growing up with a sibling experiencing IDD, impacts how the TD siblings position themselves in relation to their sibling with a disability, in relation to their family, and in relation to society. This paper will begin by looking at the relationship between TD siblings and their siblings with IDD, by exploring the emotional impact of the relationship, the multiple roles played by the TD sibling and how this changes over time. Then it will examine the positionality of the TD sibling within their family as a whole, looking specifically at how the TD sibling sees themselves in relation to their parents and sibling with IDD, how they take on a secondary parenting role, and how they address future planning as a family. Finally, it will explore the TD sibling in relation to society, by looking at how they interact with disability and strangers as well as their peers, and how they view their sibling relationship versus other typical sibling relationships.
POSITIONALITY IN RELATION TO SIBLING WITH IDD
Growing up in a family where one of the siblings is considered to be typically developing, and another experiences disability, the relationship between siblings is multifaceted. The siblings of people with IDD are heterogenous and have an array of experiences with disability (Rossetti & Hall, 2015). Though many siblings stated that they had a close relationship with their brother and sisters with IDD, the type of disability, limited communication skills, challenging behaviours, and physical proximity can cause difficulties within these relationships (Heller & Arnold, 2010). For example, siblings described how they would talk, laugh, and tease each other in multiple ways, but that communication methods and their sibling’s needs often structured these interactions (Hall & Rossetti, 2017). For example, communication was stated as an important way to sustain their relationship, especially when the TD sibling lived far away since limited communication functioning and the need for visual cues or assistive technology can hinder the ability of these siblings to continue their close relationship (Hall & Rossetti, 2017). However, using assistive technology was helpful in allowing their communication to continue and flourish (Hall & Rossetti, 2017).
Due to the fact that the needs of the sibling with IDD structures the sibling relationship, there are complex emotional impacts associated with this relationship, as well as implications for the way the TD sibling sees themselves in relation to their disabled sibling (Haukeland et al., 2015). Two of the biggest emotions associated with being a TD sibling were guilt and joy. Guilt was often felt in relation to not seeing their brother or sister as much as they had in the past, as well as within the dynamics of relationship itself, including “past feelings of embarrassment, frustration, or shame” (Rossetti & Hall, 2015, p. 128). Joy was also a common emotion that was felt, which often mitigated the challenges that accompany this relationship (Rossetti & Hall, 2015). This demonstrates that when the sibling relationship is shaped by the sibling with IDD, the TD sibling must navigate the complex emotions that accompany this relationship to understand themselves in relation to their sibling with IDD.
In addition to just being siblings, TD siblings play multiple roles in relation to their siblings with IDD. In one study that listed seven roles taken on by siblings – caregiver, friend, advocate, legal representative, sibling, leisure planner, and informal service coordinator – almost half of the siblings said that they took on four or more of these roles (Hall & Rossetti, 2017). However, the one role that stood out was that of being a sibling. Although all participants in these studies were siblings, several indicated that being a sibling was an important identity in their relationship, with some describing it as a typical sibling relationship, and others pointing to the relationship’s uniqueness due to the presence of disability (Hall & Rossetti, 2017). The fact that many siblings stated that the role of sibling was meaningful to them demonstrates how TD siblings position themselves primarily as a sibling, despite taking on multiple other roles.
Throughout the lives of TD siblings, these roles will change for a variety of reasons, where some relationships will grow stronger and others more distant (Hall & Rossetti, 2017). One of the most common changes in the sibling’s relationship is when the TD sibling moves out of the family home and away for the first time (Rossetti & Hall, 2015). Distance becomes a barrier to communicating and supporting their sibling with DD, causing strain on the relationship (Rossetti & Hall, 2015). As seen earlier in the paper, communication is imperative to the relationship between these siblings, so when there are barriers to communication, it can shift the relationship. Thus, geographic proximity determines the amount of involvement one would have with their sibling, with siblings who live closer being expected to provide more support (Saxena, 2015). Because distance can be stressful for supporting their siblings, those who live closer are able to incorporate care and support into their daily lives, in a way that those who live further away cannot (Saxena, 2015). Despite many of the participants stating that they had a strong relationship with their sibling with IDD, communication was extremely important to the strength of this relationship and distance seemed to be a mitigating factor in feeling a sense of connection.
Furthermore, when TD siblings were in their 30s and 40s, many of them had romantic relationships, began to start families and had full-time employment, and thus struggled with their own commitments and their sense of responsibility to their sibling (Saxena, 2015). Often as TD siblings grew older and developed their own lives, they worried about how they would be able to prioritize their own needs and desires against those of their sibling with IDD (Rossetti & Hall, 2017). For example, one sibling expressed that having a sibling with DD dramatically shaped the way she lived her life, including how she used her time and money, where she lived and worked, and the relationships she had with other people (McGraw & Walker, 2007). This dichotomy between trying to live one’s own life and to be there for your sibling with a disability demonstrates the complexity of growing up with a sibling with IDD. Therefore, for the TD sibling, positionality in their relationship with their sibling with IDD is complex and relies on a number of factors, including the emotions surrounding their relationship, the multiple roles they play, their geographic proximity, and balancing their own life with that of their siblings. These different factors, however, allow the TD sibling to understand themselves in relation to their sibling with IDD, in a way that reflects the unique situation and disability of each set of siblings.
POSITIONALITY IN RELATION TO FAMILY
Another important aspect of being a TD sibling with a sibling with IDD, is the positionality in relation to the family unit as a whole. A common finding with families was that the sibling with the disability is considered the centre figure in the family, and their caretaking is shared by the other members of the family (Avieli et al., 2019). This, however, causes issues for the TD sibling, who often feel detached and isolated from the family unit, as much of the care and attention needs to go to the sibling with a disability (Avieli et al., 2019). When raising both TD children and children with IDD, parents are required to balance their care between their children but having a child with a disability leads parent’s to unintentionally neglect the other siblings, causing a gap in the relationship between the TD sibling and their family (Avieli et al., 2019; Huggins, 2018). In addition, having a child with a disability requires a lot of planning and disruptions in family life, thus regular family plans may not be properly executed, leaving TD siblings feeling frustrated, sad, or as though they are missing out on what their peers and friends get to do (Barr & McLeod, 2010). Consequently, a commonly cited emotion is that TD siblings felt forgotten by their parents, and that their home lives revolved around their brother or sister’s needs (Barr & McLeod, 2010). This demonstrates how the positionality in relation to the family is more withdrawn than within the sibling relationship itself. Whereas many cited having a close relationship with their sibling with IDD and felt that their role as a sibling was meaningful to them, more siblings cited being left out of the family unit causing a disconnect between the TD sibling and the rest of the family.
In addition, within the family unit siblings did not just get to be siblings, but rather they often felt that the responsibility they were taking on was more so a secondary parenting role (Hall & Rosetti, 2017). For example, in one study, a participant said, “I have always been a mini-mother and felt like an older sister to my sibling rather than the five years younger that I truly am” (Hall & Rossetti, 2017, p. 431). Because they did not have a typical sibling relationship, and they were responsible for so much care, the TD siblings often had to grow up and mature at much faster rates (Bethany, 2018). Some siblings took on greater caregiving responsibilities when they were younger, but when they moved out and had their own responsibilities, this complicated their ability to be a caregiver (Hall & Rossetti, 2017).
Accordingly, growing up with a sibling with a disability means that there is a heavier burden of care on TD siblings than there are in other typically developing sibling relationships, thus many TD siblings take on the role of caregiver, both as a child and later as primary caregivers (Avieli et al., 2019). This caretaking can take the form of being an advocate or guardian, providing respite care, transportation, financial assistance and cooking and cleaning to name a few (Hall & Rossetti, 2017). This caregiving occurs throughout the TD sibling’s life but becomes even more important in adulthood when parents are aging and cannot provide caregiving, or require caregiving themselves (Saxena, 2015).
Though many siblings took on this role without issue, and many were glad to, caregiver burden does exist, where individuals experience negative emotions, including anxiety and worry, due to the physical and financial demands of caregiving (Burke et al., 2019; Saxena, 2015). As one participant said, taking care of their sibling with IDD was a full-time job, which compromised their ability to relax and use their time as they wanted, leading to physical and mental strain “that might pull siblings away from engaging in caregiving” (Saxena, 2015, p. 213). So, the immense amount of caregiving that TD siblings do and are expected to do later in life can cause strain on the relationship between the siblings or could be a factor in pulling away from caregiving completely (Hall & Rossetti, 2015). This shows that although TD siblings often feel disconnected and isolated from the family unit, they also position themselves as caregivers in the family, especially taking on caregiving roles when their parents no longer can.
Moreover, since TD siblings are often those who will take over caregiving when parents no longer can, planning for the future was a very important aspect of the TD’s siblings’ positionality in their family unit. Oftentimes, families do not make concrete future plans for caregiving and finances, and when they do, TD siblings are not often involved (Hellner & Arnold, 2010). However, involvement in this future planning can increase the likelihood that TD siblings will take on future caregiving roles (Hellner & Arnold, 2010). In fact, one study stated that it is not enough to expect TD siblings to be caregivers, they must be actively involved in the future planning (Saxena, 2015). As previously mentioned, TD siblings often move out and/or away from their family, begin careers, start romantic relationships, and sometimes begin families of their own, thus, it is imperative to have clear communication about the expectation on them so that they are able to plan for their future as well (Saxena, 2015). For example, when families do not communicate about future plans, they can get pushed off, and then leave siblings unexpectedly with the burden of being a caregiver (Saxena, 2015). When left out of future planning, this could lead TD siblings to continue to feel isolated from the family unit, despite the expectation and willingness to take on caregiving in the future. Thus, their positionality within the family unit is complex, where they often assume a more disconnected position within the family than in their sibling relationship, but also take on a caregiver role to support their sibling with IDD.
POSITIONALITY IN RELATION TO SOCIETY
As previously mentioned, society devalues disability, however this is not always how TD siblings see individuals with IDD (McGraw & Walker, 2007). In fact, in one study, siblings “positioned themselves outside of predominant sociocultural values” and used their connection to their sibling’s disability as a way to resist the devaluation of disability and elevate themselves morally (McGraw & Walker, 2007, p. 490). However, TD siblings are aware that their sibling with an IDD will experience stigma and barriers by other people, including children, adults, the school, local neighbourhoods, and in public places (Barr & McLeod, 2010). Though some siblings indicated feeling uncomfortable when their sibling’s behaviour drew attention, many of the studies showed that when other people reacted negatively towards their sibling with an IDD they were not ok with this and some even had strategies they used to cope with the negative reactions (Barr & McLeod, 2010). For example, when in public spaces, such as malls or grocery stores, people tend to stare, make inappropriate remarks such as name-calling, and occasionally physical attacks (Stalker & Connors, 2004). In these cases, siblings would sometimes use strategies such as staring back or distancing themselves from their brother/sister to appear disconnected to them in public, as well as wanting to tell people to stop staring (Barr & McLeod, 2010). One sibling stated that she had a rule where people could stare once, but if they continued to stare, it was unacceptable (Barr & McLeod, 2010). Because TD siblings understand society’s devaluation of disability as they are typically functioning individuals themselves, TD siblings also saw disability from their sibling with IDD’s point of view, making their positionality in society unique. As stated, though some TD siblings were ashamed or embarrassed by their siblings and would distance themselves in public to not be associated with their sibling with IDD, they also did not approve of others treating their sibling negatively and thus they used their coping skills to position themselves as advocates against the devaluation of disability from society’s perspective.
In addition to being upset with stranger’s reactions to their sibling, studies also demonstrated that TD siblings felt upset and angry when their peers used offensive terms in relation to people with disabilities (Barr & McLeod, 2010). Despite TD siblings having negative reactions to people who disrespect their siblings with IDD, siblings also indicated that they had reservations about having their peers over to their houses while their sibling with IDD was home (Barr & McLeod, 2010). They also questioned whether their friends even wanted to come visit or if they would feel uncomfortable around their sibling with IDD (Barr & McLeod, 2010). However, some siblings reported that going to friends’ houses was a way to escape their own family and a way to idealize normality (Bethany, 2018). Though this escape was positive for the TD siblings, they also felt that their peers and friends did not understand the different relationship they had, which led to more feelings of jealousy and sadness (Bethany, 2018). This demonstrates how TD siblings are in a constant state of negotiating their position in relationships outside of their sibling or family relationships. Peers and friends were sometimes a way to escape disability and experience “normality,” however due to the proximity of TD siblings with disability and their positionality in their relationship with their sibling with IDD, it was especially difficult to navigate society and peers when they spoke negatively about people with disabilities. TD siblings can both experience typical functioning as well as proximity to disability, and are thus, always negotiating their place in society.
Next, a prevalent theme throughout the literature was how siblings viewed their relationship with their sibling experiencing IDD, versus how they saw typical sibling relationships. Some TD siblings described their relationship with their sibling with IDD as being a typical sibling relationship, however more often than not, TD siblings compared their sibling relationship to their peer’s typical sibling relationships (Hall & Rossetti, 2017). Many viewed their relationship as very different from the sibling relationships of their friends, due to the additional roles and responsibilities they had at home (Barr & McLeod, 2010; Hall & Rossetti, 2017). Some of the other differences they reported included how they communicated and played with their siblings, and the amount of support they provided their sibling with IDD, that others in typical sibling relationships did not have to do (Hall & Rossetti, 2017). This often led to feelings of sadness and jealousy when viewing other typical sibling relationships (McGraw & Walker, 2007). For example, one man in his 40s said, “When I’m not with them, specifically, when I’m watching an interaction between older “normal” siblings, I am saddened because I don’t have that kind of relationship with my brothers. I would like to know what that’s like” (Rossetti & Hall, 2015). Thus, what was clear in the studies was that TD siblings had sacrificed a lot in their childhood as compared to their peers (Bethany, 2018). For that reason, it is obvious that TD siblings navigate complex emotions when understanding their positionality in society, while maintaining their positionality within their sibling relationship and the family unit as a whole.
CONCLUSION
In conclusion, this paper has explored the ways in which TD individuals who have siblings with IDD position themselves in relation to their sibling, in relation to their family, and in relation to society. Overall, within the relationship between siblings, TD siblings view themselves primarily as a sibling, but also take on other roles, such as caregiver, advocate, and legal representative. Many participants stated that their relationships with their siblings with IDD were positive, but that things like distance and difficulties with communication can hinder the relationship. Next, TD siblings felt more isolated in their positionality within their family than in their sibling relationship due to the increased attention that goes towards the sibling with IDD. Also, it was stressed that since TD siblings will most often become primary caregivers when their parents are no longer able to, it is important that when future planning does happen TD siblings are active participants in these discussions so that they understand the expectations of them in the future. Finally, TD siblings must also understand themselves in relation to society. Because they are typically developing individuals, TD siblings experience society’s ideal view of functioning, where disability is devalued, but also experience disability in a unique way as a sibling of someone with IDD. Therefore, through their positionality in relation to their sibling with IDD, their family, and society, TD siblings are in a constant state of navigating and understanding their complex position in the world.
REFERENCES
Avieli, H., Band-Winterstein, T., & Bergman, T. A. (2019). Sibling relationships over the life course: Growing up with a disability. Qualitative Health Research 29(12), 1739-1750. DOI: 10.1177/1049732319837228
Barr, J., & McLeod, S. (2010). They never see how hard it is to be me: Siblings’ observations of strangers, peers and family. International Journal of Speech-Language Pathology 12(2), 162-171. DOI: 10.3109/17549500903434133
Bethany, F. (2018). “I was a third parent”: A qualitative study of growing up with a sibling with Dravet Syndrome [Undergraduate Dissertation, Manchester Metropolitan University]. E-space. Retrieved from https://e-space.mmu.ac.uk/621702/
Burke, M. M., Lee, C. E., Hall, S. A., & Rossetti, Z. (2019). Understanding decision making among individuals with intellectual and developmental disabilities (IDD) and their siblings. Intellectual and Developmental Disabilities 57(1), 26-41. DOI: 10.1352/1934-9556-57.1.26
Friedman, C., & Owen, A. (2017). Defining disability: Understanding of and attitudes towards ableism and disability. Disability Studies Quarterly. DOI: 10.18061/dsq.v37i1.5061
Hall, S. A., & Rossetti, Z. (2018). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities 31, 423-434. DOI: 10.1111/jar.12421
Haukeland, Y. B., Fjermestad, K. W., Mossige, S., & Vatne, T. M. (2015). Emotional experiences among siblings of children with rare disorders. Journal of Pediatric Psychology 40(7), 712-720. DOI: 10.1093/jpepsy/jsv022
Heller, T., & Arnold, C. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities 7(1), 16-25. https://doi.org/10.1111/j.1741-1130.2010.00243.x
Huggins, E. E. (2018). Family planning decisions after a child’s diagnosis of Rett Syndrome: A pilot study. [Master’s Thesis, University of South Carolina]. Scholar Commons. Retrieved from https://scholarcommons.sc.edu/etd/4723
McGraw, L. A., & Walker, A. J. (2007). Meanings of sisterhood and developmental disability: Narratives from white nondisabled sisters. Journal of Family Issues 28(4), 474-500. DOI: 10.117/0192513X06297312
Meltzer, A., & Kramer, J. (2016). Siblinghood through disability studies perspectives: Diversifying discourse and knowledge about siblings with and without disabilities. Disability & Society 31(1), 17-32. https://doi.org/10.1080/09687599.2015.1127212
O’Neill, L. P., & Murray, L. E. (2016). Anxiety and depression symptomology in adult siblings of individuals with different developmental disability diagnoses. Research in Developmental Disabilities 51(52), 116-125. https://dx.doi.org/10.1016/j.ridd.2015.12.017
Rossetti, Z., & Hall, S. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons with Severe Disabilities 40(2), 120-137. DOI: 10.1177/1540796915592829
Saxena, M. (2015). Variables that can enhance and complicate sibling caregiving of individuals with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities 12(3), 210-219. DOI: 10.1111/jppi.12127
Stalker, K., & Connors, C. (2004). Children’s perceptions of their disabled siblings: ‘She’s different but it’s normal for us’. Children & Society 18, 218-230. DOI: 10.1002/CHI.794
Zaidman-Zait, A., Yechezkiely, M., & Regev, D. (2020). The quality of the relationship between typically developing children and their siblings with and without intellectual disability: Insights from children’s drawings. Research in Developmental Disabilities 96. https://doi.org/10.1016/j.ridd.2019.103537
Alana Cattapan 