Warped Framing of Ability (notes to the editor)

September 27, 2016

I felt a distinct sense of unease when reading Naomi Chainey’s article, The frustrating 'appearance politics' of travelling while disabled . While it gestures towards the very real misunderstandings and damaging assumptions about disability in society, it also sanctions and trivialises them in a disconcerting way. I gave my full permission for Naomi to use my words, photo and travel experiences in this article, with a tangential hope that she would distil the complexities around various disabled experiences. Unfortunately, it just seemed to bolster the underlying unable/able dichotomy, which my comments candidly sort to dismantle.

To occupy the “caree” role, to be the person who apparently needs to be cared for, is the other and arguably less benign side of the barrage of assumptions about ability. This position is inherently degrading and undermining of one’s humanity, but usually happens in the most well intended ways. This is a very real affect of ableism, the pity dressed up and presented as kindness or generosity, the sneaky looks to an accompanying able-bodied person to confirm what we are saying. These personal interactions imply we have less agency, or at a more basic level, right to live than our fully able-bodied counterparts, and these incidents accumulate, and grate against one’s existence and self.

Interestingly enough, when Naomi was saying she was ignored at the Yooralla Media Awards, I couldn’t help but think, “hey that’s good old ableism”. Framing Phin as the pity-worthy one (and therefore, in that scenario, obviously the most praise-worthy). Yet, there are so so so few occasions (bar the Paralympics), where that kind of pity-praise conversion is somewhat logical and valid, and crip embodiments are seen as an asset and acknowledged. That for Naomi to express frustration for being treated “as part of the furniture” in one of those rare moments, is insensitive to what visibly disabled people feel every day. At the same time, I get it, she probably spent a lot of her vital energy and bodily resources on the [obviously brilliant] work, not to mention travelling to the awards ceremony, only to be negated because she looks so “average” and functional. Although in most situations, that seems to be a distinct advantage to me, to blend in, to conform, and to be able to challenge ableism “from within”, because usually able-bodied people are seen as more credible.

Moving through any ableist space with an obvious disability means making people uncomfortable and constantly and plainly agitating common definitions of what the human condition looks like. I can tell you from experience, transforming that social discomfort into something you proudly own and accept as part of your identity, is not easy. It’s also probably not easy trying to garner a coherent sense of self, when you don’t have any visible or straightforward markers of disability. It creates another sort of social agitation and tension, and that carries its own exhausting discordance with your inner experience and identity

So Naomi obviously and understandably wishes for an innate social and bureaucratic cue for people to understand, empathise and assist with the hardships and pain that come from her invisible disabilities, but she seemed to desire the same social response that Phin’s embodiment elicits without also thoroughly interrogating them. Consequently, she reinforced the discrimination of the visibly disabled experience as valid and acceptable. She failed to appreciate those responses to Phin are not ideal, because people “fall over themselves to help” and accordingly they situate Phin’s perceived needs as a site of unease, revealing the underlying ableism of most social interactions. What is important to recognise is reactions to perceived ability are all curated by ableism in our society. While I often feel like Naomi or another person with an invisible disable are perfectly poised to trouble those assumptions, by demanding assistance and “coming out” as disabled. Even though sometimes it might be, it often isn't the case, due to the rigidity of the social image of disability and the emotional drain it constantly is on them.

I have experienced this complex negotiation in my own life and friendships. One of my best friends, Jo also experiences ableism in her daily life, but like Naomi, it has a completely different shape and texture for her. She seems like an average twenty-something-year-old – she’s gregarious, articulate and, for all intents and purposes, able-bodied. Yet, what is not apparent is that she has trained herself to adjust her behaviour and uses her vast skillset to compensate for her cognitive deficiencies for overt ableism, socially and at work. This is the direct result of living in a society that is unwilling to culturally accommodate diverse embodiments. I have witnessed times where Jo can’t get out of bed, because she’s so overwhelmed and exhausted from trying to manage (negotiate and conceal) her various disabilities on her own.

To give you some background, Jo and I met at our university’s disability collective years ago, we were advocating for better access and trying to claim space for disability both as a student experience and as a valid and accepted identity. Obviously and unavoidably, we have very different relationships to disability – and we both claim “disabled” as an identity marker, in attempt to remove some stigma, and collapse the independent/dependant binary that ableism creates. We have had countless discussions and philosophical debates over how we identify and how we get perceived when we’re out. Jo regularly mentions to casual bystanders that she is dyslexic, and I communicate by fingerspelling, so “we have hilarious conversations”. We are very close, and she tries to debunk the hasty perceptions (often of my incompetence), with more vigour and passion than I can muster, because I am sadly desensitised to it.

It’s also sad that I feel it necessary to say that I am exponentially fortunate to be encountering these social slights and miniscule indignities of my very middle-class life, because I had wonderful people who fought for my basic rights growing up. People continue to unconditionally love, nurture and support me (lots of disabled people don’t have these things, and therefore don’t achieve a sense of power over their own lives). I am perpetually learning to navigate and challenge ableism. I still merely smile, nod and sign “thank you” to unenlightened hotel reception staff, or when a barista thinks it’s necessary and “especially nice” to leave the busy counter to bring me my coffee order. I constantly fumble for the energy and the presence of mind to confront this all-too-common social stigma and pity attached to my specific disabled mode of existing.

I appreciate Naomi’s frustration of not being granted the assistance or adjustments she needs to function effectively. Those experiences are the epitome of what ableism does: it associates disability with vulnerability, incompetency and inability. So when you defy those visible stereotypes, society (and sometimes even the disability community) hasn’t developed innate responses for that, and so it refuses to engage. For example, I have to constantly prove my capability, while Jo has to prove she’s incapable in some ways, when and if she needs/wants to. I don’t want to subtract or belittle Naomi’s social erasure; I don’t know what it’s like to be constantly explaining your disability and proving your right to support… Wait, a second, maybe I do, but admittedly I don’t have the added complication of appearing fully able. However I can say that Naomi didn’t acknowledge this as a social privilege in the ableist society we live in, to interact with strangers and not be dehumanised or pitied. But yes, she’s ridiculously denied assistance she should have access to, and not be indignantly doubted and invalidated.

Being visibly disabled, and therefore often falling into the socially constructed “dependent” category, habitually means having intangible cultural and physical barriers to education, employment and social life, which dehumanises us. Those with invisible disability appear “independent”, fully able. Thus, they get told that they “should” fit into the social norms and stop whinging about requiring extra support. I would say, from intimately knowing Jo’s experience, that in these more concrete and overtly patronising ways, society - medical care, mainstream education, workplaces and services – is sometimes very rigid and inaccessible, which makes people feel stupid and irrational, just because they don’t look disabled. Ableism sucks and is thoroughly devastating for everyone, people need to stop comparing experiences, no one wins, and everyone loses. It is in the way ableism operates to view only particular human experiences as worthy and valid of being nurtured. In order to resist this polarised and reductionist way of viewing human ability, we need to work towards valuing our differences in a more wholistic way, not resenting them for subtracting from our own agendas.