Thursday, October 4, 2018

U of T course makes room for kids who grow 'sideways'

Photo by the University of Toronto

By Louise Kinross

A couple of years ago I connected with Anne McGuire, an assistant professor in the Equity Studies Program at the University of Toronto, after she co-wrote a critique of the Hospital for Sick Children's SickKids VS ad from a disability perspective.

Since then I learned that Anne teaches 
a class called Disability and the Child. It draws on history, psychology, neuroscience, policy studies and the arts, as well as critical theories of race, class, gender, sexuality and disability, to explore how disability is largely viewed in today's culture as a threat to the goodness of a 'normal' childhood. "What alternate depictions and narratives of disabled childhood exist and what can they teach us?" asks the course outline.

This is an undergraduate course, but it struck me that it would be valuable for medical and other health-care students, and for anyone working in the field of children's rehab. We did this interview by e-mail.

BLOOM: Why is there a need for your course?

Anne McGuire:
I teach a number of disability studies courses in the Equity Studies Program at New College U of T. For the most part, my other courses tend to focus on adult worlds
we talk a lot of about disability rights and justice activism, disability arts, culture and representation, disability histories as well as more contemporary debates. Despite this focus on adult issues and struggles, the disabled child is nonetheless a key figure that both haunts and motivates these struggles. Developing this course was an opportunity to explore the relationship between how we imagine children and how we build our world. 

The child is often treated as a figure or symbol of innocence, purity, and simplicity. The child is understood to be ever vulnerable, and because of this, always in need of adult protection. Many scholars have described how the child figure works as a powerful political tool, one that is commonly used to argue for a wide range of different social outcomes.

Paying attention to the child as a powerful cultural symbol can teach us about how our society is put together. By studying the child figure, we can learn a lot about what adults think and about how they create hierarchies in the world.

Disability studies tells us that disabled peopleincluding disabled children and youthare often placed very low on social hierarchies. I developd this course in the hopes that thinking about the child as a figure or symbol can help us to better understand the ways our world is made inaccessible and exclusionary for a great many disabled people, including disabled kids. 

BLOOM: You mention in the course description that disability is often seen as a threat to the presumed goodness of a normal childhood. Can you give some examples?

Anne McGuire:
In class, we’ve been talking about how disability is often constructed in polar opposition to the notions of purity and innocence that commonly define the time of childhood. 

In mainstream, popular culture, disability is very often talked about as something which taints or takes away disabled children’s childhoods. For example, in my book War on Autism, I discuss how, in the first decade of the 21st century, it was very common to encounter advocacy campaigns that depicted autism as a kind of invader, or as something that threatened or stole otherwise neurotypical children. New York University’s 2008 Ransom Notes campaign is a really overt and glaring example of this: '
We have your son' read a campaign ad designed to look like a ransom note. The note was signed 'autism.' 

These days, we’re seeing disability campaigns that are a lot more positive and hopeful in tone. Louise, you and I have both written about the memorable 2016 Sick Kids VS. campaign ad, which depicted sick or disabled kids fighting back against conditions ranging from cystic fibrosis to cancer to autism. While this spot is much more upbeat and hopeful, I worry that the underlying message is not all that different from more glaringly problematic campaigns like Ransom Notes.

In both NYU’s Ransom Notes and Sickkids VS, disability is framed as that which prevents pure and innocent kids from realizing their potential. While, of course, there are many childhood disabilities and illnesses that are life threatening and that do threaten to eclipse a child’s long-term future, there are also many disabilities and illnesses that are chronic and ongoing.

These conditions are almost always a central aspect of a person’s lived experience, and sometimes even an important part of their identity. The idea that disability or illness is naturally or inherently devoid of future and potential is very problematic for disabled people of any age. It stops us from paying attention to the complex, and often very radical, ways that disabled and sick kids and adults are negotiating their bodies, minds, and worlds.

BLOOM: One of your readings looks at children in the future and “investments in human capital and waste.” How do perceptions of a child’s value change when they may not be able to be productive in conventional, money-making ways?

Anne McGuire:
This notion of the ‘child as future’ often invites a kind of economic way of thinking about children and childhood
this sense that we need to invest in children in the here and now to secure more prosperous futures for them and for us all. 

I hear this economic logic everywhere these days and it's often very literal: children’s development is made synonymous with the production of human capital.

Just a quick example of this. In class we’ll be taking a look at the well documented association between extended breastfeeding and increased infant brain development. 

According to the research, breastfeeding promises to also boost cognitive, motor and language skills, and even raise kids’ IQ’s. A number of studies have even suggested that extended breastfeeding might lead to greater productivity of the breastfed individual later in life, boosting their earning capacity and, with it, their chance at a more economically successful future.

Putting aside the debate as to whether or not ‘breast is best,’ what’s interesting is the way this research frames good (i.e., normal or beyond normal) child development as the outcome of good parental (read: mothers') choices. What's also interesting is how normal child development has become deeply entangled with a nation's economic development.

Looking at how the breastfeeding research has been adopted by government and other agencies, we can start to see how a child’s normal development is not only being framed as a parent's private obligation to their child, but also as a kind of civic responsibility.

This economic way of thinking about children’s developing bodies and minds is really harmful when it comes to kids who develop in ways other than the norm. 

Too often, the atypically developing body or mind is framed by researchers, policy makers, politicians and the media as just too-costly, or as a draining on the public purse. 

The underside of notions about human capital are ideas about human waste. In economic terms, those disabled people who do not, choose not or cannot contribute in economically profitable ways, are very often cast as burdens. Of course, there are many other non-economic, yet valuable ways of contributing to the social whole! What and who do we miss when we only measure human contribution and value in monetary terms?

BLOOM: Do you talk in your course about hierarchies of value within disability? That some disabilities are seen as being more valuable than others? And that there is stigma even within the disability community?

Anne McGuire:
I think this question links back to the last one. We live in a world that seems to measure and value people in general, and disabled people in particular, in terms of their capacity to act as producers and consumers within a capitalist economy. 

This means that a disabled person who can near seamlessly blend into their school or workplace, who does not ask for too many accommodations or cause too many disruptions to the productive flow of a school or work or social environment, might be readily celebrated, welcomed and included. However, the culture of disability inclusion is not hospitable to all disabled people. This division exists, as you mention, even within disability communities.

We talk a lot about the existence of these hierarchies of privilege and oppression and about how they continue to operate within disability communities and within the discipline of disability studies itself. We also discuss how we might redress this unevenness. 

Disability justice activism has placed an important emphasis on cross-ability organizing and on ensuring that our disability scholarship and activism is responsive to those communities of disabled people who are the most, and multiply, marginalized.

BLOOM: What themes in your course might be eye-opening/useful for parents of children with disabilities?

Anne McGuire:
Invariably, we end up talking a lot in this class about parent culture, and about how parents are often framed by society as solely personally responsible for their child’s future. This is true for parents of disabled and non-disabled kids alike, but parents of disabled kids may face unique and heightened social scrutiny over their parenting choices.

We talk about the common idea that parents can and should always be working to ensure their child’s normal (or at least more normal) development by making “good” choices (e.g., by exposing their child to classical music in utero, buying organic foods, seeking out private therapies, or buying developmentally stimulating toys).

This approach to child development seems to promise that all kids can and should grow up to be astrophysicists (or whatever society deems as its ideal), if only parents expose them to culturally enriched experiences or the latest in development toys.

We talk about the sheer pressure this 'consumer choice' model of parenting puts on all parents. Not only does this way of thinking assume that all parents and kids agree on what counts as a good future, it also draws our attention away from very real social and structural conditions that often make it difficult for disabled people and their families to negotiate and thrive in their communities. Often, good futures are less determined by where our bodies and minds fall on a standard developmental timeline, but by the accessibility of our schools, homes, social spaces or workplaces, or by the quality of our community supports or the availability of respectful medical care and personal attendants.

Not all kids are going to grow and develop in the same way and that’s not a bad thing! Social ideals are very often built to exclude ordinary disabled kids and people more generally. One of the central premises of disability studies is that disability is itself valuable to both individuals who live with it, as well as to the social whole. 

The assumption that atypical development is a state simply to be avoided or fixed or enhanced flies in the face of the many disabled people (and their parents) who speak openly about the ways disability has enriched their lives.

Of course, when I say disability is valuable, I’m not discounting the very real struggles faced by disabled people and their families. And I don’t think there’s anything wrong with buying organic, or exposing your child to music in the hopes that they will one day turn out to be a great musician! What becomes problematic is this idea that there is only one way to be great or healthy or successful, or that a particular set of abilities is a prerequisite to having access to a good life.

BLOOM: Do you have a favourite topic to teach? Why? 

Anne McGuire: I’ve been doing some writing (with Prof. Kelly Fritsch at Carleton) on disability and genetic risk, and am really looking forward to the prospect of bringing some of this research into the class when we look at genetic narratives of the child and the current debates about tailoring educational curriculums and environment to a student’s genetic risks profiles.

I’m also really looking forward to tomorrow’s class, which is called Child’s Play! We’re all bringing in an artifact of childhood
be it a toy or a piece of clothing or an object that is commonly used by or with children. Our group task is to read or interpret these objects for how they anticipate a particular kind of child-user. What would a course on the child be without a few opportunities to play? 

BLOOM: Why did you get interested in disability in the first place?

Anne McGuire:
I have a disabled sibling and so I think that has made me more attuned to the ways our society thinks and speaks about disability. I found a home in disability studies because of a series of experiences and relationships, and I continue to be invested in understanding disability as a relationship between bodies, minds and their environments. A byproduct of thinking about disability as a relationship is that all of our bodies and minds are implicated in disability politics, albeit in different ways!

BLOOM: What have you learned from teaching the course?

Anne McGuire:
I’ve come to better appreciate just how important and central this figure of the child is to the making of adult worlds, and how cultural ideas of the child shift and change. What the child is and what it means is very political. 

We have to ask: how do we define 'child?' Which kids are not readily recognized as kids, and which adults are cast as perpetually child-like? How does society readily mobilize to protect certain children from all manner of risk, while at the same time, refusing to protect other kids from social, political and state violence? 

I've been surprised by how the students have harnessed the idea of the child as an entry-point for all kinds of important discussions about equity: they have shown me how the child pushes us to address questions of racial justice, decolonization, class politics, and, environmentalism, immigration, gender politics and, of course, underpinning this, questions of disability rights and justice.

Of course all of these justice issues and social phenomena have very real, material consequences in the lives of actual children. And so the task before us is to think about how we might use what we’ve learned to work for a world that is more accessible and welcoming to, and for, disabled youth and kids.

BLOOM: Have you seen any significant changes in mainstream talk about disabled children?

Anne McGuire:
Back in the early 2000s, when I first started collecting examples of representations of autism that were being circulated by advocacy and awareness organizations (what would later become the basis of my PhD research), there was a very uniform and widespread sense of tragedy, fear and doom that was being communicated. 

At the time, autism advocacy routinely depicted autism as a kind of social menace or evil villainsome 'thing' that threatened children and their families, something that should be lessened, cured and/or eliminated at all cost.

Over the past two decades or so, mainstream representations of autism have changed quite a bit. These days, we are most likely to encounter more positive campaigns focused on inclusion, spectrums and neurodiversity. While the tone and tenor of the conversation has changed, I worry that the emphasis on child enhancement and normalization is still very present. 

We're seeing disabled children included in mainstream ad campaigns and celebrated in many facets of this culture
for example, the 2018 Gerber baby is a child with Down syndrome. I’m really happy to see these developments, but I still think it’s important to question which disabled kids are readily included in mainstream celebrations of diversity, and which continue to be left out.

When it comes to childhood disability, it's common to talk in terms of classifications like low and high functioning, and severe or mild. These divisions, unfortunately, continue to produce moral hierarchies of better and worse ways of being disabled. All too often, the more positive campaigns and mainstream representations of disability celebrate the so-called high functioning disabled child, or the child who can approximate society’s normative ideals. 

I admire Holland Bloorview’s latest Dear Everybody campaign
including the ad with the image of a teenage girl who uses a wheelchair and the text: 'This is what a storyteller looks like.'  On the one hand, it asks viewers to attend to the ways disabled youth are flourishing in, and with, a wide array of bodies and minds, while, on the other, naming and pointing to social conditions like discrimination and inaccessibility that can compromise this flourishing.

BLOOM: Does your course examine both intellectual and physical disability in children?

Anne McGuire:
I’ve tried to make sure that my course readings address a broad range of topics and lived experiences. Perhaps, because of my own research background, the course this year is focused on neurological, genetic and psychiatric disabilities, as well as notions of neurodiversity. For example, we're reading work that addresses the cultural politics of autism, ADHD, and various psychiatric labels given to children and youth.

We look at the media surrounding the outbreak of the Zika virus a few years ago in Central and South America, and critically engage with the reports and images that emerged of infants with microcephaly.

There are weeks that look at the racial and gendered politics of school streaming, and the over-representation of students of colour in special-education classrooms. We key into contemporary debates around genetics and education and ask what this might mean for disabled kids and youth as they negotiate already inaccessible school systems. We also look at popular debates about the over-diagnosis of children and youth with psychiatric labels.

BLOOM: Isn’t the academic world problematic for people with intellectual disabilities?

Anne McGuire:
The last time I taught this class, we had a number of pretty interesting discussions about the ways we, as a society, value intelligence. Intelligence has, for a long time, been used as a means of creating hierarchies of people. This was deeply influenced by the rise of eugenics in the 19th and early 20th centuries, with its racist, classist, sexist and ableist fears of the so-called 'feebleminded.'

We talked about the everyday ways in which we might reaffirm the superiority of conventional intelligence over other ways of knowing. These kinds of questions are, of course, especially relevant in the context of the university, and somewhat ironic given that students in the class are graded on their individual intellectual outputs.

One conclusion was that we need to attend not only to the ways intellectually disabled people are made absent from academia (which is certainly important), but also to the ways intellectual disability is present within the university. As a class, we read texts and screen films and podcasts written or created by people with the label of intellectual disability. There have been some students in courses I have taught who have shared that they were given the label of intellectual disability in their childhoods. 

Many students in disability studies speak and write about their encounters with special education. Other students are parents of kids with intellectual disabilities. All of these students carry their perspectives and experiences with them into our classroom.

Listening to, learning from, and being changed by these diverse experiences and perspectives offers us opportunities to push back against conventional assumptions that intellectual disability is incompatible with university education, and to imagine and practise a more accessible university.

BLOOM: Recently there’s been a big social media campaign with the hashtag #docswithdisabilities. But every time I read about it, I can’t help thinking that they’re talking about physical disability. I sat at a conference about how cultural devaluing of kids with disabilities may compromise their care, and a neonatologist stood up and said: 'There is a feeling among my colleagues–an unspoken and probably unconscious bias–between physical and mental disability. Sometimes neonatologists think if you're not perfect, mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.' How, and will, that ever be challenged in the academic world?

Anne McGuire:
We live in a 21st century world that privileges the mind/brain. This idealization of the brain or the mind marks our time as somewhat different from, say, the height of the industrial revolution or even the WWII era, where physical agility and strength was the mark of the ideal body. Technologies today mean that some physically disabled people are able to fit, nearly seamlessly, into their school, work and home environments (though certainly not all or even most, and the vast majority of disabled people worldwide don’t have access to these technologies).

Disabled people who might be classed as severely intellectually disabled or low functioning
people who, in other words, do not fit seamlessly into the normative requirements of school or work or homeare disproportionately and acutely vulnerable to systemic and interpersonal discrimination and even physical and psychological violence.

This troubling fragmentation of the disability community into those deemed to be deserving of life, and those deemed to be better off dead, has long been challenged by scholars and activists in disability studies. Of course there are really important journal articles and books written on the topic, but I think what makes me the most hopeful is that these conversations come up regularly in the disability studies classroom. 

Disability justice writer and activist Eli Clare writes that we need a disability studies that always and firstly 'points us towards justice.' Our students are so thoughtful, incisive and critical and when they move on to pursue their careers, or as they simply live in the world, they carry forward their questions and experiences, challenges and insights.

BLOOM: You and I spoke about the new Nike ad with Colin Kaepernick. The campaign has brought in $6 billion for the company, so it appears the public loved it. What message do you think it sends, why is this such a popular message now, and why is it problematic?

Anne McGuire:
A big part of the Disability and the Child course is dedicated to thinking about the fact that kids (disabled and non-disabled, alike, I think) are expected to not only be 'normal' or average but rather to be 'extranormal' or 'better than average' in all ways, all the time. 'Lose 120 pounds and become an iron man
after beating a brain tumour' says Nike spokesperson Colin Kaepernick in the ad. Kaepernick is himself a very powerful voice here, as he's lived the effects of widespread systemic racism. 

There’s something really compelling and empowering about this ad, and its promise that freedom and justice and equality are simply ours for the taking. And yet, we know that losing 120 pounds or becoming a high performance athlete, these things are not only or simply a matter of decision: body size, access to athletics, the capacity to excel in athletics
these things are deeply influenced by, for example, social class, genetics and a variety of other social and biological factors. 

'Beating' cancer almost never comes down to personal choice or positive outlook. The Nike ad seems to suggest that everyoneand maybe disabled people and others who face social injustice in particularneeds to be superhuman as a means of achieving social equality. I would question this idea that social justice only can be achieved when everyone has the freedom to be one thing, or even a limited range of things. For me, justice looks more like moving together with, and across, and towards our differences. 

BLOOM: Was there ever thought given to making your course available to medical students?
Anne McGuire: The courses I teach are housed in the Equity Studies program, which is an undergraduate program, and so I don’t often have the opportunity to cross paths with med students on campus. 

That said, I have former students who have gone on to medical school, nursing or occupational and physical therapy programs. I’m glad for this. I think a background in disability studies is incredibly valuable and really essential for people doing work in the health and medical fields. While disability studies certainly critiques the medicalization of disabled people, I think the field has an important role to play in pushing for more accessible healthcare for disabled people. I’m always supportive of conversations to explore more options in this area.

BLOOM: Your last reading on the list you sent is called Growing toward a question mark. What is the question mark?

Anne McGuire:
The title of the last week of class refers to a beautiful piece of writing by queer theorist Kathryn Bond Stockton. In her book, Stockton is concerned with the queer child, or the child, she says, who develops non-normatively–who is out of pace or at odds with the norms, ideals or requirements of society. 

Stockton’s work turns toward the child who is faced with nowhere to grow, precisely because the idea of what counts as a proper or good childhood has been so thoroughly defined to exclude his or her body or mind. I just love how this essay offers an affirmation of the possibility of growing and developing otherwise
where kids who don’t, or can’t, grow up in accordance with the developmental demands of our society, might instead grow 'sideways.' Kids and adults alike might yet grow toward a 'question mark,' she says, or towards a future that holds and supports their difference. 

You can follow Anne @anneemcguire.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.