That time I punched a boy in the forehead: sibling stories ahead of research

Abstract

In the past month, I have been building relationships with community members at a prairie-based research site in Canada by telling a story about my own sibling advocacy. Namely, the story about that time I punched a boy in the forehead when I was a kid. I observe that this story helps build trust between me and the families invested in a new research project. This is a current issue because recent research on the utility of sibling stories suggests that these narrative accounts, diverse as they may be, are foundational to knowledge creation about disability. Yet these stories are under threat of pathologization when they are understood through a clinical lens, rather than a critical disability studies lens. I conclude by suggesting that sibling stories ought to be claimed as pivotal to critical understandings of disability experiences.

Keywords:

• Sibling
• community-based research
• storytelling
• voice
• intellectual disability

That time I punched a boy in the forehead

As a kid I was not allowed to enter my neighbour’s treehouse because I was a girl. My brother, Kevin, was not allowed because he was ‘weird’. These were the backyard rules, dictated by my seven-year-old neighbour and his younger brother. They made the rules because it was their treehouse, on their property. Kevin and I spent summer afternoons on the grass, looking up at the treehouse – a hideaway complete with a bird’s-eye view of the neighbourhood for all necessary reconnaissance. I wanted to get up there. I wanted it bad.

I stated my case to the boys: I was the same age and therefore should be allowed in the treehouse. And, actually, Kevin was not weird. Kevin was curious and gentle. Plus he was popular. The only three year old with Down syndrome in the 1200-person prairie town of Roblin, Manitoba, Kevin was known by everyone. And because I had been ordered by my parents to keep a close watch over him, Kevin was part of the package: ‘You guys have to let me in, and Kevin too.’ But my arguments did not land. The boys stood across from me and firmly reiterated their rules. Upset for reasons I could not name, I curled up my fist and punched the bigger boy square in the forehead.

The boy fell backward onto his bum. I shook out my knuckles. I had never thrown a punch before, and it hurt. Tears welled in the boy’s eyes. He screamed ‘I hate you!’ and stormed inside his house to tattle. His mother called my mother. My mother called me inside.

’You can’t go around clocking everyone who doesn’t include Kevin’, she told me: ‘If you do that, your knuckles will be ruined forever.’ She did not punish me, but she made me agree not to throw any more punches. She also left me with the distinct impression that Kevin’s participation in almost everything would always be up for debate, and that I had to cope differently.

Calling up sibling stories in research

This is the story I have been sharing with families involved in community-based research that brought me back to the prairies last year. I did not expect to begin my project with this story. However, as a postdoctoral fellow working with people whose modes of communication take time for me to learn, I am often face to face with their family members. These families have hidden languages; they say things to one another that nobody else can understand. Kevin and I also do that, although admittedly my parents are his best translators. I am in the incipient stages of this research – a project that asks a group of disabled people in Regina, Saskatchewan, to critically interrogate what ‘voice’ means to them.

I spend these early days meeting with the group for coffee, or sitting with them in the pub. Family members ask direct questions of me: ‘Why are you here?’ and ‘How do you expect to talk with us?’ As a critical disability studies researcher in this town, I know it would be useless to bog down these get-to-know-you chats with theory. These questions are paired with ‘Do you take the bus?’ and ‘Have you been to the new Walmart?’ So I tell the truth: I am here to learn. I shall talk more with people when I figure out their (or our) communication styles. From there, we will think about research. And yes, I do take the bus, sometimes even to the new Walmart.

My academic credentials are not helping me gain the trust of this community. What might be helping me forge connections, however, is my understanding that sibling relationships are an integral part of many disability experiences. For example, a mother of one participant asked whether I have a disabled family member. I answered honestly. She told me her children grew up with activism in their blood. That is when I told her about punching my neighbour in the face. From there, she invited me into her home.

Storytelling as disability activism

It is a strange feeling to earn trust because I once punched a kid. Or perhaps it is because I am willing to share this story. People who listen to this story share memories of their own: someone who swore at a teacher for insulting her sister; another person who pushed a lifeguard into a swimming pool when her brother was excluded from a swimming lesson. It is not that any of us (necessarily) condone these violent responses to disablism. However, we share experiences of being in relation to disabled people. Part of this relationality includes moments of powerlessness, and our reactions range from calculated to rash. Some of us are closely bonded to our disabled loved one(s), while other sibling sets experience massive estrangement through forces such as institutionalization or death (Burghardt 2018; Rogers 2015). These experiences contribute to our understandings of what disability activism means, and what research about disability might become.

As these conversations grow, I have noticed storytellers’ tenses shifting from past to present. Some are replacing their parents as primary caregivers. There is a gap in our knowledge around the aging experiences of intellectually disabled people. Siblings hold some of that knowledge (Coyle, Kramer, and Mutchler 2014). In the same breath, I hear anger. Siblings do, at times, feel anger towards society (Guse and Harvey 2010). We have been stared at by proxy (2010, 393). Also, we are often familiar with how our brothers and sisters are cast and subject to what Fellner et al. (2017, 326) call ‘enduring harms of classification: stigma, exclusion, and self-stigma’ encouraged by institutional structures that govern our lives. We experience these harms as we move through the world linked to, but also separate from, our disabled family members. Other sibling studies point to darker themes: concerns about siblings’ health and longevity (Guse and Harvey 2010), and grief and suffering as systems violently fail our families (Rogers 2015). Some siblings are directed not to talk about their disabled brothers or sisters – they carry ‘secretive’ narratives that may encase stories of institutionalization (Burghardt 2015). All stories have lasting impacts.

Pathologizations of sibling stories

The sombre themes presented lend themselves to an academic interest in our well-being. For instance, in 2012 Australian researchers published results of a survey that asked 52 young siblings (aged 10–18 years) about their mental health (Giallo et al. 2012). Respondents reported ‘overall good mental health’ (2012, 40). Yet, because some reported ‘angering easily, non-compliance, and arguing and fighting with others’, the researchers understood them as unable to cope with demands and stress brought on by disability in the family. Although some siblings report higher levels of family stress elsewhere, in non-clinical studies this feeling exists alongside family unity (Guse and Harvey 2010), ways of thinking about classification ‘with nuance and insight’ (Fellner et al. 2017, 323), and the pain of grappling with the lifelong repercussions of institutionalization (Burghardt et al. 2017).

This concern for our mental health pathologizes, classifies, and individualizes our sibling relationships, as Meltzer and Kramer (2016) explain. To pathologize our family relationships undermines the intersections of disability and mad studies that might critique such inquiry as ableist and sanist in its utter disregard for the socio-cultural and intersectional circumstances under which our stories unfold. For instance, my childhood reaction to exclusion – that is, cuffing a kid in the face – demonstrates that I angered easily and refused to comply with neighbourhood rules. I argued. I engaged in a fight. This story is a privileged microcosm of my larger encounters with ableism and some of its allies: patriarchy, capitalism, and colonization. The boys are the patriarchy; the treehouse is the capitalist institution; the property line is the colonial divide. That these things evoked outrage in me should speak to the valid beginnings of my own disability activism rather than to any perceived plight that disability imposes on my family.

We do not engage in our familial relationships without struggle. No family is perfect. But now we must add to our struggle the risk of pathologization – an experience our sisters and brothers know too well. It is no wonder, then, that I, as a researcher, am greeted by families with a degree of suspicion.

The need for sibling stories in research

I tell my story with gratitude for researchers who facilitate sibling storytelling (Burghardt et al. 2017; Guse and Harvey 2010; Meltzer and Kramer 2016). Sibling disability research is an understudied area that has room for the cultivation of radical methodological approaches. I tell this story with gratitude for those who are sharing their stories with me.

However, I understand that without Kevin’s perspective, mine is a half-story. Researchers point to a need for sibling disability research that does not solely privilege the perspectives of non-disabled siblings and instead includes multiple perspectives (Meltzer and Kramer 2016; Richardson and Jordan 2017). For now, sibling stories are a brand of narrative that includes histories of silence and silencing; ‘unspoken lives’ that shape us (Burghardt 2015, 1081). Especially when these anecdotes revolve around non-verbal folks, there is a need to think through new forms of composition.

Still, I put forward that sharing personal experiences – as capricious as they may seem – is a viable way to bridge the academy with the community. Meltzer and Kramer (2016, 26) suggest that such research ‘could unpack how siblings with and without disabilities imagine their respective futures, both together and apart, within a context that may include … the changing nature of attitudes and policies towards disability’. I look forward to a new tenor of sibling stories someday.

Claiming sibling stories as cornerstones of research

We have not talked about ‘voice’ yet in this research project, even though it is the problematic at the crux of my inquiry. We will get there. For now, we are sharing our personal histories of disability activism that crack open other ethical and methodological dilemmas: how do we include voices we may not understand? Is anyone entitled to ‘give voice’, under what conditions, and for what purpose? These are the underlying questions behind those already asked: ‘Why are you here?’ and ‘How do you expect to talk with us?’

As Burghardt (2015, 1071) says, ‘we are all formed within the stories of our families’. For this reason, sibling and other familial stories ought to be claimed as cornerstones of community-based disability research. These stories establish our positionality – imperfect as it may be – and bridge activism and the academy by emphasizing disability as a cultural phenomenon shaped, in part, by shared experience that is constantly at risk of pathologization. I never would have thought a childhood punch would pack so much weight. But here we are, outside the treehouse, on the verge of something better.

Acknowledgements

The author thanks Leah Dolmage and Margaret Oldfield who share sibling stories with me (outside of the aforementioned research). The author also wishes to acknowledge Kevin and younger sister, Emily, who has many stories of her own.

Disclosure statement

No potential conflict of interest was reported by the author.