By Alex Franklin, author of the forthcoming Ageing by Design
I have an ‘acquired disability’. As a phrase it's intended to pithily communicate that my disability is one that I wasn’t born with, but it annoys me. I keep coming back to it and poking it, in much the same way as one would a sore tooth or a splinter. It’s a benign, polite description and, as such, one deliberately intended to obfuscate the bodily trauma of those it describes for the comfort of the addressee.
In polite (read, wealthy) circles one ‘acquires’ a painting or a horse or - if you’re a Jane Austen character - a fortune. ‘Acquired’ suggests a level of pleasurable and agentic choice; that one shopped around and, after careful consideration, decided upon the disability that best went with one’s other acquisitions. As such, it appears an extension of the normalised acquisitiveness of contemporary late-modern consumer culture…and in a way it is.
For every kind of disability there is someone trying to sell you a person-centred fix. ‘Person-centred’ sounds good, but what it actually means is that it is the individual who is expected to change, not society or the actors in it. Whether it’s the latest in (terrifying) stair-mounting wheelchairs, esoteric diets or the apparently universal panaceas of yoga and mindfulness, the onus of responsibility is on the disabled person to “fix” their unruly body or at least have the decency to appear “normal”. As a disabled woman that means (still) not complaining, not making demands, not taking up space, not inconveniencing other people, continuing to put energy into appearance maintenance and keeping on smiling. Smiling to put everyone else at ease, to hide the pain and, most notably, to hide the anger.
I am so angry! Not at my being disabled, although I am not best pleased about that, but rather at myself and increasingly at many of my peers. For my condition revealed in me and (many of) mine an axiomatic ableism that I continue to find profoundly shocking. For all of my wokeness regarding the myriad effects and permutations of intersections of gender, race, age, sexuality and class on one’s experience of being-in-the-world, I now realise how little appreciation I had of the impact of dis/ability. Intellectually I understood that ‘disabled’ is an identity category determined by the neoliberal body project, within which the dissident body (whether through disability, weight, age or illness) is framed as an elective (i.e. individual moral) failing, thus rationalising the poor treatment of those thus labelled. Rationally I have always understood this as hateful rubbish and have sought to act accordingly but this intellectualisation failed to insulate me against its effects.
I am angry at my deep-rooted internalised ableism: that I blame myself for my condition, that I feel guilty for being a burden, that I’m not doing enough to get “better”. I am angry at my ambivalence towards my body; that I default to seeing my body as a thing that has failed me, a “failed” thing that I get impatient with and embarrassed by. As a feminist scholar, I am especially angry at the deep-seated self-objectification that this evidences and how rooted these responses are in an internalised acceptance that my value is dependent on my ability to perform both paid and unpaid physical and emotional labour for others. I am angry that others now find me and my failed body “difficult” and “demanding” and I am really angry that on one level, a level I am working hard to resolve, I still agree with them.
Acknowledging the multiplicity and depth of my anger has been both a liberating and sobering process as it has become increasingly apparent that it was not an anger that I ‘acquired’ along with my disability.
I’m mad as hell and I have every right to be. I know I am not alone in that anger.