Undeniable? Undeniable. (Guest Post)

 

Georgia and Nancy, in the car. Georgia, leaning against her mom, is wearing a turquoise toque with ear flaps and chin strings. Nancy is wearing a black wool hat and orange stripey scarf.

I’ll be honest – I didn’t want to like the new ad for SickKids. I’m surprised that I do, given that, for the most part, I don’t support the use of language in illness that refers to “fighting battles” or “losing a valiant fight against cancer”. (See Cate’s post about this worry here.) This kind of language permeates health and illness care (“attacking germs!”or “wiping out cancer cells!”). Many adult patients find this language challenging, and tiring, as it suggests retaliation and active engagement in fighting is the only feasible option. And for those whose illness may worsen, the feeling that they have failed in some way is almost inevitable.

Some people simply object to words that refer to violence to describe their day-to-day existence and prefer a more compassionate approach with less confrontational language. Others may find the idea of fighting a battle with illness to be empowering, energizing, or inspirational. But there’s no consensus out there that there is one way to talk about disease or illness, and that’s something that I think this ad highlighted for me, in part.

This is not the way many want to think about illness – battles, stuff blowing apart, superhero moves, and kick drops – but maybe it’s more important to recognize that we all have different ways of thinking about all of this. And there’s no one right or wrong way.

Having worked as a nurse with kids who are sick, and having a daughter with a disability, my experience is that we often tend to treat children with illnesses or disabilities, quite literally, “with kid gloves”. We don’t talk with the same kind of confrontational language about childhood illness. We tend to talk more about fairness, the vulnerability of children and the loss of childhood. We see vulnerability first, and then the child.

So often we see the illness, the wheelchair, the central lines, the equipment, the walker, and only then, after, do we see the child. We protect, we comfort, and we soften the world around these children – with all good intentions – but the result is that we, so often, see illness, disease, and disability first before we actually see children.

Then here comes this ad, this jarring, powerful, in-your-face ad, with these tough, wonderfully, resilient kids. Kids missing limbs. Kids on operating room tables. Kids being defibrillated. Kids who have an illness, or a disability, and this ad manages to ensure that the illness or the disability – or the defibrillator – is for once, not the first thing you see. I understand the objections many have to the imagery of battle, the violence of taking a baseball bat to a dialysis machine, or the idea of including a reference to fighting back against autism, but the reality was, for me, watching this felt empowering, compelling and refreshing. It felt relieving in a way, as if someone had read a few of my thoughts some days – the thoughts that I wouldn’t necessarily voice to others, as a mother of a kid with a disability.

After watching the ad a few times, I tried to figure out what it was that I liked about this ad. There are a few things:

First, there are the images. There’s not an image here that hasn’t been thought through carefully, I’m sure. And it shows. The battle scenes show kids in the front line, adults behind. When intermingled with operating room imagery, it forces you to remember that, in the operating room, the kid on that table really is the one on the front line. Not the rest of us, in there, who can put on gloves and masks, do our jobs, and go home at the end of a 12-hour shift. We’re the supporting warriors, with little to lose. The image of a girl on top of a pile of wheelchairs draws you to really see the child, not the mess of metal beneath her. The same with the girl with the lucha libre mask – I see her, not the hospital room around her. The little girl pulling her walker behind her, in this ad, forces us to acknowledge her incredible strength and determination, the hours of painful and grueling physiotherapy that it took to just get to where she is. She looks strong, powerful and invulnerable.

Second, there’s the idea of fighting. Against cystic fibrosis. Against kidney disease. Against cancer. Against autism. This is imagery many might not wish to embrace. And I also get that many object to adding autism onto a list that includes illnesses like cancer or kidney disease. There’s a lot of childhood disease, illnesses and disability out there that those who developed this ad could have chosen from, to highlight. Autism is an interesting and clearly controversial one. But you know what? Some days I’m really sick of autism. When I see my kid struggling with the tiniest thing that has thrown a wrench into her entire day I too just want to put on a lucha libre mask and deliver a flying thrust kick to autism. I want to run across a battlefield yelling if I thought it would do any good. I don’t feel like that every day. But when I do, I usually swallow that feeling and hold it somewhere inside. I don’t share it with others or ask others to understand, because I know many won’t and, well, that’s okay. It’s a tough thing to want to fight back against that which, in many ways for others, defines who my child is, defines the opportunities others will provide and defines how others both view and treat her. For me, she isn’t my “autistic child”, but rather, “my child who has autism”. Autism isn’t all she is, and it isn’t her sole defining feature, but it is here and it needs to be reckoned with. Some days we both are just tired and some days we’re angry and frustrated. What I don’t want is someone to tell me how to feel about those days. This ad acknowledges something that hasn’t been acknowledged, for me, almost ever. When I see that image of fighting back, it resonates – and puts something out there, out loud and in your face, that many parents of kids – and kids themselves – might well feel, but don’t have a place to express.

Finally, there’s the notion of undeniability. Watch the ad a few times, and you walk away with the word echoing in your head: Undeniable. These kids are undeniable. Their inherent strength, their fight, it’s undeniable. These illnesses are undeniably rotten sometimes. It sucks to be sick. It sucks, some days, for some kids, to have autism. It’s undeniable. And cancer, well, you can’t pretend it’s not there. It’s undeniably present and pervasive. Cystic fibrosis means intensive lifelong therapy, a shortened life span and frequent hospitalizations. I’ve watched a very good friend struggle, yes struggle, with cystic fibrosis, while it is true that he also flourished and was strong and wonderfully alive. But he struggled; it’s undeniable. He really did lose his fight against this undeniable disease. I can’t imagine any other words to use for him and for the deep loss those around him feel after his death. Many felt a great battle had been lost. We simply couldn’t unfeel that. This ad, I think, in some ways, says that, hey it’s okay to feel that.

And autism? Well, it’s undeniably constant. It permeates so much of what we do, and feel, and experience, for my daughter and for those around my daughter. But she’s also undeniable. You cannot see the autism without first seeing her. I see Georgia everywhere in this ad. She’s the kid standing on top of the wheelchairs and walkers that I was told would never walk, she’s the kid marching in the superhero cape that I was told I should institutionalize, and she’s the kid playing lucha libre that I was told would never have an imagination. She’s the kid dragging her walker behind her, after years of physiotherapy, just to prove everyone wrong. And it is not without fighting and battling some days that she still moves through her world. Undeniable. I’m glad someone finally said it.

Nancy Walton is an Associate Professor in the Daphne Cockwell School of Nursing at Ryerson University in Toronto. One of her areas of research examines the experience of parenting children with special needs and acting in the role of therapist. She is Georgia’s mother and writes a blog about parenting at lifewithgeorgia.com.

 

 

 

 

 

 

13 thoughts on “Undeniable? Undeniable. (Guest Post)

  1. Shelley Tremain says:

    I’m a philosopher of disability and spend a great deal of my time thinking and writing about how disability is conceptualized, represented, and so on. I’ve noticed that one of the ways in which disability is depoliticized is through a form of exceptionalism, according to which political values, beliefs, principles, and so on held in some domains are not carried over into the domain of disability. I often see this phenomenon occur with respect to disability and language, representation and disability, ableist language. The critiques of ableist language must meet requirements not made of (say) feminist critiques of sexist language. So, often when a philosopher of theorist of disability criticizes ableist language or ableist representations, someone will come forward to say that (for instance) they have a friend who is disabled and such language or representation do not bother their friend, there is no consensus on the matter, no one right way to talk about disability and disabled people, no way is better than any other.

    But philosophers and theorists of disability spend a considerable amount of time arguing against this view, that is, spend a great deal of time trying to show that there are some ways of writing, talking about, and representing disability and disabled people that are better than others, that some ways of doing so have detrimental effects for disabled people somewhere down the line.

    The arguments of this post with to respect to “people-first” language and language and representations used with respect to autism run directly counter to the arguments that an increasing number of disability theorists and activists make. The language of “special needs” that is used in Nancy Walton’s by-line has been long been identified as problematic insofar as it renders accessibility supererogatory and discretionary.

    Why is so little of the discussion about disability that occurs on this blog informed by disability theory, philosophy of disability, and disability activism? Or, rather, why is there so little informed discussion about disability on this blog?

    Like

    • Tracy I says:

      1. This is nof an academic blog and most posts, including Nancy’s are informed by personal experience. Maybe her experience doesn’t resonate with everyone and doesn’t reflect the latest in disability theory scholarship but it’s hers.
      2. I have approached several scholars who work on disability to write for the blog and for various (legitimate) reasons they have not been available to do so.

      Liked by 2 people

      • Shelley Tremain says:

        Tracy,
        I think that your comment is one example of the type of exceptionalism that I pointed to in my comment. I don’t see every kind of “woman’s” experience represented here. For instance, I don’t see the experience of women who are anti-feminist represented here.

        There has been an upsurge of writing about disability on this blog, but almost all of it has been by nondisabled women, or so it seems to me. Is it OK for anyone to write about disability here, from any perspective?

        Like

      • Tracy I says:

        It’s not true that almost all has been by nondisabled women.
        It’s shocking to me that anyone would discount Nancy’s experience of raising Georgia just because she doesn’t offer a disability scholar’s perspective. In fact, I find it quite appalling.
        You seem to be suggesting that only scholars of disability who write from your perspective should be writing for the blog, while at the same time consistently criticizing the blog’s approach and existence. In fact, we will never be able to satisfy your demands about our treatment of disability because we will not be posting academic scholarship in critical disability studies because we don’t post scholarship on anything.
        I repeat, this is not an academic blog nor is disability its focus. If you don’t like the posts or the blog that’s your right.

        Liked by 2 people

  2. fieldpoppy says:

    Love this — thanks Nancy.

    Like

  3. Sam B says:

    Lots of posts by women with disabilities. I’ll share a full list later. But, for example, here’s one recent post,
    https://fitisafeministissue.com/2016/09/17/climbing-things-choking-people-and-disability-inclusion-guest-post/

    Liked by 1 person

  4. Sam B says:

    And Nancy, thanks for posting!

    Liked by 1 person

  5. Shelley Tremain says:

    I was not denying that there have been posts by women so tt isn’t necessary to post a list as a response to me. I said that there has been an upsurge of posts, by which I meant a upsurge since recent criticisms of blog with respect to disability.

    I find the responses to my comment quite defensive, unnecessarily so.

    Like

    • fieldpoppy says:

      Shelley, from my observation, what I find jarring about the lens you often offer this blog in the comments is that you seem to greet personal narrative of often wrenching, completely vulnerable lived experience with hostility, as though your version of theory invalidates the lived experience of people with different experiences of disability/varying ability/ability from you. This is not remotely inviting as a way into a dialogue or conversation — it’s like whacking someone on the head for having a different experience of meaning of their OWN LIVES than you do. I am curious about your lived experience — and let me tell you, I would never tell you that your experience of your life and the meaning you make of it isn’t the right one. Which is what I often experience in what you say about other people’s posts.

      Liked by 1 person

  6. Jean says:

    I appreciate your perspective as a health care professional and as a mother, Nancy.
    For audience here:

    I appreciate acknowledgement of the perservance and personal strength in personal disability matters. The “battle” reality or metaphor, is useful sometimes but not always. It’s exhausting for a person / psychologically wearying to think of it only as a “battle”. This extends to any personal barriers in gender, racial or socio-economic matters.

    Perhaps it’s allowing a person just to “be” who they are in their entirety and getting rid of misperceptions to start the journey for a better relationship and dialogue especially when our time on earth is limited.

    We want to encourage anyone regardless to live, and how to express this will vary at different times and in different methods. The best start is to walk beside them and listen.

    Liked by 1 person

  7. I almost cried while reading this. Thank you for sharing this about your daughter. I have a close friend who is on the spectrum he is considered “high functioning” and is a talented singer and musician and sometimes he shares certain things about his illness with me such as “sensory overload” or not picking up on social cues. I always like to learn more and I love the fact that you were so honest here.

    On Oct 24, 2016 2:40 AM, “Fit Is a Feminist Issue” wrote:

    > Nancy Walton posted: ” I’ll be honest – I didn’t want to like the new ad > for SickKids. I’m surprised that I do, given that, for the most part, I > don’t support the use of language in illness that refers to “fighting > battles” or “losing a valiant fight against cancer”. ” >

    Liked by 2 people

  8. […] few weeks ago, I wrote a guest blog entry for the truly fabulous blog Fit, Feminist and Fifty (which if you are not reading regularly, well, […]

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