Category Archives: Editorials

It’s Time to Stop Portraying the Lives of Disabled Children as Tragic for Parents.

It’s Time to Stop Portraying the Lives of Disabled Children as Tragic for Parents.
By Derek Newman-Stille

I just finished watching the Netflix show “Atypical”, which seeks to portray the life of a family with an 18 year old autistic boy as one of its members. The show bills itself as a comedy and seeks to portray this autistic young man, Sam’s, attempts at finding a girlfriend. It is another show that cashes in on portraying disabled lives as an alternation of tragedy and comedy, counting on its viewers to alternate between finding Sam’s antics humorous, while simultaneously portraying his life and the lives of those around him as tragic. 

Even though the show uses the tagline “normal is overrated”, it in fact reifies normalcy, putting the audience in the position of viewing Sam’s life as hilarious (even positioning students making fun of Sam for his neuro-atypical behaviour, while trying to play this scene up for laughs by the audience). It portrays Sam’s friends and girlfriend as people who have to constantly advocate for him, at one point even having Sam’s sister, Casey, tell his girlfriend that she shouldn’t get too close to him because then he will depend on her and she won’t be able to leave him (a sentiment that he then repeats later). These sentiments reflects and magnifies the already existing message that disabled lives are a burden on those around them – the image that we, disabled people are perpetually defined and shaped through the notion of dependency. Despite the fact that Sam is a competent, intelligent, capable person, he has to depend on his younger sister to give him lunch money at a certain point in the day. This is never explained and seems to be an uncomfortable fit with Sam’s capacity in every other part of the show. Yet, the writers seem unable to give Sam agency. 

The most dangerous part of the messaging around this show comes from the portrayal of Sam’s interactions with his parents. His mother, Elsa, defines herself through her relationship with her son, taking on the identity of “parent of an autistic child” over everything else. The show focusses on the “sacrifices” she, her husband, and her daughter have to go through as part of having an autistic child. Parenting an autistic child is portrayed as tragedy, and the show focusses on the damage that has been done to Elsa’s relationship to her husband, justifies Sam’s father, Doug’s abandonment of their child because it is “too much” for most parents, and portrays Casey as the ignored child because her parents didn’t ever have time to care for her because their lives had to revolve around Sam. Sam is portrayed as a autistic bomb dropped on his family with continuing damaging results. 

I have heard from a few people about this show that they admire the show’s bravery in portraying the mother of an autistic child needing to take time for herself, but I would argue that that isn’t something that is happening in this show. This isn’t about balancing caring work with personal time, it is about her feelings of having not had a life because an autistic child has damaged it. I think it is important to acknowledge the need for any parent, and particularly mothers who end up doing most of the caring work in their families, to have time for their personal growth and time for self care. However, the way to do that is not to portray parenting a disabled person as a perpetual tragedy. Although there is no doubt that the lives of mothers are shaped by a system that seeks to oppress them, it is my perspective that their liberation should not come at the expense of people with disabilities and that there is a way to liberate both groups without inherently portraying one type of life as tragic for another. There are very real social consequences to this portrayal particularly since government and private research groups continue to search for genes or conditions during pregnancy that can cause congenital disabilities and then suggest that any child that could have been born with a disability be aborted. Our society already has difficulty imagining disabled lives as viable, but the additional constant messaging that disabled lives are tragic for parents tends to encourage parents to not want disabled children. This has direct repercussions for the lives of disabled children, creating a situation where it is difficult to find people who are willing to parent disabled children.
Of course, this problem is magnified by the fact that there are relatively few portrayals of parents of disabled children who live happy lives. Our stories tend to focus on disability as tragedy rather than disability as benefit, so the overwhelming amount of portrayals of disabled lives as tragic tend to override any other possible portrayals or even the likelihood of our society viewing disabled people as anything other than a burden. We can see this in our governments, who tend to look at disability as an inherent negative, frequently preventing the immigration of disabled people, discussing the economic deficit of disabled people, and generally failing to provide accessible spaces because disabled people aren’t seen as beneficial enough to be permitted access to all spaces. 
Sam’s narrative is one shaped by treatment, learning from his therapist and those around him how to be neurotypical. His mother attends a support group that at one moment is about sharing horror stories about having a disabled child and the next moment talks about person-first narratives and NOT describing disabled people as tragedy. This sort of mixed messaging is not entirely without grounds in a lot of organizations, because frequently organizations will focus on language around disability while simultaneously encouraging a view of disabled people as dependent and making decisions without the involvement of disabled people. There is a cadence of these meetings that reflects organizations like Autism Speaks, who tend to exclude the voices of autistic people, while elevating those of parents, also focussing on Autism as something that should be treated and eliminated rather than focussing on providing accessible spaces for autistic people, tends to raise money for attempts to “cure” autism rather than recognizing it as an important part of neurodiversity. Many of the messaging boards attached to Autism Speaks tend to provide a space for parents to talk about the difficulties in raising an autistic child. This approach mirrors some of the approaches taken in Elsa’s support group. This type of approach contrasts with groups like the Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people that focusses on disability rights advocacy and provide a space for neurodiversity. The Autistic Self Advocacy Network focusses on the notion of “nothing about us without us”, and this approach would have been something beneficial for the creators, writers, and those involved in the production of “Atypical” to consider.

Spatializing Disability and Considering Belonging 

By Derek Newman-Stille

Access. Access is a central issue for disability since we live in a society that only creates space for able bodies. It assumes a singular bodily ontology and our physical spaces are moulded to conform to that single body. Those who don’t fit the mould are expected to make our bodies fit, to modify our bodies, movements, interactions to fit with a singular interpretation of space. 

In this construction, we are made exiles in our own homes, in our own cities, towns, and villages. We are expected to accept our position of non-belonging in our own spaces, assumed to be comfortable with all of the responsibilities of citizenship, but without the basics of belonging that citizenship claims to offer. We are imagined to be content on the fringes, margins, and edges, those few spaces that accommodate our bodies and provide us with access. 

So what does this mean for our notions of home? How do we disabled bodies fit in to a nation state that has geographic boundaries but makes these geographies inaccessible to us? How do we gain access?

Perhaps the disabled body provides us with a space for re-thinking belonging, for critically questioning how we can occupy and take up space. 

Our bodies are perceived as awkwardly occupying space. We notice this through the states we evoke, the way that we are both hypervisible (stared at) in public spaces and simultaneously invisible (particularly when we need help or when city planners develop architecture). Yet, maybe this positions us as bodies that are able to CHALLENGE ideas of belonging that exclude, maybe this positions is as radical bodies in a space that seeks to pacify through the rhetoric of normalcy (that is constructed only to make bodies and identities not belong). 

Maybe we need to consider belonging and citizenship trough the lens of access. Maybe we need to think about exclusion and barriers to belonging when we think about how we occupy or are made unable to occupy our spaces.

Fictional Portrayals of Disability- Why Do They Matter?

By Derek Newman-Stille

I frequently get asked why I look at portrayals of disability in fiction. I am often told that I should look at something “real” and “substantial” like policy. 
I find this an interesting assumption. People frequently assumed that marginalized identities are going to be best changed through policy and politics, but policies are shaped by social consciousness, by the realm of ideas. Fiction is about the realm of the possible, the realm of ideas, and it is ideas that make changes more than policy. Policies won’t change social attitudes unless there is a social receptiveness to these changes. 
I frequently think about this in terms of requirements for accommodation in building codes, and the notion that undergirds this: “minimal compliance”. Minimal compliance with building accessibility codes mean that people can continue to view disability as a PROBLEM, as an issue that doesn’t need to be accommodated, but instead needs to be appeased. This means that buildings often have spaces that don’t really fit disabled bodies, but instead fit codes. Disabled bodies are still viewed as non-viable in these spaces, perceived as a barrier to an easy build rather than a necessary inclusion. Rather than viewing us as needed and essential participants in these spaces, we are viewed as inconvenient obstructions. 
Fiction provides a space for radical rethinkings of our social spaces, challenges to a system that is content with our erasure. Fiction invites society to radically re-imagine our perceptual frameworks, our entrenched beliefs and the things that we consider self-evident. 
Yet, our fiction is produced from the moulds that have been created previously, from our social frameworks and from our existing taken-for-granted understandings of the world. Our fiction, and our ways of imagining disability are fundamentally problematic, limited, and actively damaging. They reproduce ideologies that push disabled bodies further to the fringes and influence policies that don’t really include disabled bodies and often actively exclude us. 
Our fiction, our imaginations, need an infusion of something new and potent, something that radically reconsiders not just literary tropes, but imaginative possibilities. We need a radical reconception of the way that disability occupies our imagination, challenge images that reduce us, and open up new possibilities for discourse.
Critical explorations of popular culture, literature, art, imagination, are not just things in the realm of academia. We should all be radically reconsidering our portrayals, critically questioning them, discussing them, and producing something new.

Able-Bodied People Speaking ABOUT Disabled People

By Derek Newman-Stille

Far too frequently, able-bodied people feel that they have a place to talk about disabled people. They use different justifications for this act of narrating our bodies to us, but the bottom line is always the same. There is an assumption that our bodies are open to public debate, that we are resigned to expertiseism about our bodies not only by medical practitioners, but anyone who feels that they have a stake in narrating us. 
I see this most commonly when it comes to medical practitioners, whose power to narrate our bodies is so strong that we have to depend on their assessment of our bodies to get access to basic accommodations. Our own narration of our bodies is never considered enough to guarantee that we will acquire everything we need. In university I observed this with the accommodation letters that I was forced to bring to my professors. My own narration of my bodily needs was not enough to be considered appropriate, so I needed to bring a letter detailing my needs in order to get them. Catherine Duchastel de Montrouge brought up the need for accommodation letters during her recent talk at the Canadian Disability Studies Association and discussed the fetishization of the accommodation letter for our post-secondary education system. Duchastel de Montrouge talked about being told by professors that she shouldn’t need accommodations, that she would be denied accommodations because the “professor knows best”, and the suspicion of accommodation letters by most professors. When talking to her, I likened the accommodation letter to a passport, allowing us into a space that we are considered unwelcome in and a space where we can have our rights withdrawn at any time. We depend on these accommodation letters for access to education, but they are dependent on the physician writing them, a university office drafting their final copy, and a professor deciding to abide by these letters. 
This is, of course only one example of the need for physician letters, since disabled people also need the word of a physician to access disabled parking, be able to use accessible seats on aeroplanes, have access to disability accommodation, and in order to access government support funds for people with disabilities. 
I have frequently had people narrate my body to me after seeing me walking with a cane. I have been told “if you work hard enough, you won’t have to use that any more”, been asked “why do you think you need a cane?”, and been told that I “look normal enough”. These narrations happened by strangers, which frequently occurs for disabled people. Able-bodied people have been told through their media that they have a right to narrate disabled people’s bodies to them, to tell us how to live our lives, how to be disabled in this world, and how we should act to make them more comfortable with our presence on the landscape. 
A friend recently came back from a writers’ conference where she was the only disabled person on a panel about writing disability. It should be abundantly clear to everyone that disability is generally not written of well in our literature and popular culture, so I am amazed at how little people want to listen to disabled people give input on their bodies and how to write them well. She noted that all of the able-bodied people on the panel tried to tell her how disabled characters should be written, replicating tropes about disability. They even waved their hand at her to say “people like you” when talking about people with disabilities. 
I have experienced similar issues when able-bodied people have asked me to read their stories about people with disabilities because they generally respond to my reminders that the character is presented problematically by getting angry and saying things like “that is how I need the character to be for the novel to work” or “but it’s not really about their disability, its about what it means for their society” or “but I saw a meme on facebook that said this” or “I talked to someone who was disabled and they said it was okay to write people like them this way” or “but I read a book on it by a doctor and this is what they said” or “but I tried to make this character a nice person, isn’t that enough?” This is one of the reasons I have become more hesitant to read people’s manuscripts, especially when they portray disabled people. I know that little will shift when I ask them for more, ask them to do better, or ask them to listen, pay attention, and understand. 
Able bodied writers and media consumers seem resistant to hearing back from the people they write about. Our disabled voices only complicate the easy symbolism that they write onto our bodies, our three-dimensionality only complicates the simple one-dimensional characters they want to write.  We make it hard to write us when we speak up.
I think that bears repeating: We make it hard to write us when we speak up.
I think this could be a call to action. A call to able-bodied people to actually listen to us, a call for convention organizers to have disabled people speaking about disabled characters, and a reminder of the call “nothing about us without us”.