Disease Is Not A Metaphor by Cyree Jarelle Johnson Disease is not a metaphor for some crude and unnamed other. Disease is not capitalism, nor is it communism. Disease is not anarchy, nor is it the threat of anarchy. Except for when the body is chaotic and unknowable. Disease is not a virus in the system. Disease is not the body, not the whole, but a part. Disease is not a test from god. Disease is not a fiery furnace, a wall to climb over, a home to be lifted out of by rope. Disease is not a battle to be won or lost in death. Disease is not a metaphor. Disease is not hyperbole. Disease is neither metonym nor synonym. Disease is a condition of the body. Disease is a visitor. Disease is a backseat driver who climbs up front and takes the wheel. Illness is not a filigreed way to speak about things unpleasant and undesired, no matter how comfortable you may be with thinking of it in that way. You were not “crippled” by debts, nor “paralyzed” by fear, nor was your Thursday evening movie “lame”. You are not “blind” to the reality of the situation, nor “deaf” to the concerns of a close friend. You were re-entrenching able-bodied supremacy in language though, is there a specialized insult for that, taken from the lexicon of sorrow heaped upon people who are not yourself? No, there are not more important things to think about than words, because the things that you say are the substance of your thoughts, which become the things that you do and the biases you keep close to your chest. Neither disease, nor illness, nor disability is a convenient way to transmit your point into the bodies of those who would not listen otherwise. Disease is so rarely convenient. By invoking disease you have likely hit the point in their brains that monitors pity, fear, and disgust. If you are talking to me, it is the sector that should learn to better control rage. Disease is not for you to take on and cast off and diagnose yourself anew each morning. Disease is not for you to diagnose in the bodies of others, based on your novice opinion and ableist vision. Disease is not erased by the clever sidestep of euphemism. You cannot close your eyes and blink it away in hopes that we will die before you open them up again. You may utter the name of the disease loudly, I do not think it offensive. The body is not an apology for the disease. The body is not something to be looked at with eyes cast down and weeping. The body is not something to be viewed with the smug sense of knowing what health is. The body is not an apology for the disease. The body is not a manifestation of corporeal weakness and lack to be filled up by Jesus or God or the holy spirit. The body will not untwist itself, anti-virus itself, or cover itself up no matter how many prayer circles surround it, or altar calls it kneels before. The body is not something to feel sorry for because the body is not sorry. The body may be twisted and sly, but the body is not an apology. The body is not a mistake. The body is not a quirk. Not something to be aborted in utero because of preemptive pity and shame that you could produce such a body. The body is not something to be tested out of existence, or prepared for with good breeding. The body is not something to be quarantined in sanitariums and put under the defacto house arrest of disgust. The body should not be killed with medication and medical middle managers who know best while no one cares that you are dying. The body is not something to be fought against or beaten in a race against oneself. The body is a beating, spreading thing, moving and touching even at rest. And the body is not miraculous or brave, even though it does so many things you think it shouldn’t be able to. And the body is not just like yours even though there are overlaps in desire and function. Sameness is not a prerequisite for solidarity. And you should care about it even if you have made conscious attempts to ignore our bodies, to look away, to avoid hospitals and the smell of home care. And you shouldn’t need an apology because the body is not wrong. Looking Back but Moving Forwar<l / 99 Chapter 6 marginalized and other people to both benefit from that marginalization and jnstify it, becanse the rest of ns are inferior. Lastly, acceSSibility cannot be addressed universally; rather it mustbe approached holistically. While the medical model presents disability as falling somewhere on a Looking Back but Moving Forward. spectrum between full health and the absence ofit, the radical model posits that, to borrow Foucault's (1969) concept, disability falls somewhere in a The Radieal Disability Model constellation. Like the constellations in the sky, disability is in constant flux and appears different depending on the positioning ofthe onlooker. This model rejects the social model's distinction betweenimpairmentand None ofthe models discussed so far have adequately addressed both disablism disability. To review: "impairment" is defined bythe social modelas functional and disabled minds and hodies; rather, theyfocus either onthe oppression we limitations and "disability" as the oppression "imposed on top ofour impair- experience (social model) or on what the models define as our flawed bod- ments" (UPIAS in Oliver 1996: 33). The radical model ofdisability rejects the ies and/or minds (eugenic, medical and charity models). This final chapter notionthatimpairmentis a biological reality. The radical modelalso posits that discusses the radical model of disability, my proposal for bringing disability impairment and disability can necessarily be distinguished from each other. politics into a newwave. This framework, while based on the workofa number This model is not the social model ofimpairment - while the model has a of disabled activists and scholars (notably Clare, 1999; Davis, 1995,2002; strongfocus onthe social construction ofimpainnent it rejects the dichotomies Moore, 2002; Erickson, 2007; Epstein, 2009) as well as feminist, anti-racist, created by the social model. anti-capitalist and postmoderntheory, is relativelynew. Developedin organiz- In some times, places or cultures, havingvisions is viewed as wholly nega¥ ing meetings and coffee shops in Toronto, it is myproposal for howwe should tive, requiring the individual to undergo medical intervention, confinement, move disabled people's movements forward and how anyone concerned with medication and!orforced electric shocks to the head. Inothertimes, places or social justice should conceptualize disability.' It is also a call to action, for dis- cultures, it is seen as a gift. Similarly, deafuess is understood to be a disability abled people and non-disabled people alike, to organize inclusively for social bythe medical model but for some people this has been far from the case. For justice and radical access. instance, in Martha's Vineyard around the turn ofthe last century"everyone ... The radical model defines disability as a social construction used as an spoke sign language;' accordingto Gale Huntington, wholived there at the time. oppressive tool to penalize and stigmatize those ofus who deviate from the The townspeople "didn't think anything about [Deafpeople], they were just (arbitrary) norm. Disabled people are not problems; we are diverse and offer like everyone else" (in Groce 1985: 2).Deafness was perceivedverydifferently important understandings ofthe world that should be celebrated rather than and not as a disability in the way that it is in a communitywhere most hearing marginalized. people are unable to communicate with Deafpeople. What is considered a There are four key concepts in the radical model. Firstly, disability is not disability depends on the context. separate from other forms of oppression; rather, it is interlocked with and overlaps them. Secondly, what is considered normal is arbitrary and requires Intersedionality deconstruction. Up until this point, all ofthe models ofdisabilityhave failed to A foundational component ofthe radical model is the idea ofintersectional- challenge the supremacyofthe norm. Margrit ShildrickandJanet Price (1998: ity: addreSSing multiple oppressions together and in conjunction with each 236) havewritten, "A more radicalpolitics ofdisability, then, would disruptthe other. The word "radical" is derived from the Latin, meaning "havingroots:' A norms ofdis/abled identity... by exposing the failure ofthose norms to ever conceptualization ofdisabilitythat did notinclude, atits base, the acknowledg- fully and finally containa definitive standard:'Thirdly, thedisabilitylabel is used ment ofand engagement with tbe interlocutory nature ofoppressions could to marginalize specific types ofpepple in orderto obtain and maintain power; not be a radical model. the classification ofdisabled is a pplitical determination, not a biological one. Within disability theory, intersectionality is often ignored. For instance, Disability is not about whether or not something is "wrong" with someone; disability studies have been called "white disability studies" (Bell 2010: 374), it is about the classification of disability, which allows certain people to be and the exclusion ofwomeninthat discipline has alreadybeen documented. Eli 100 I Disability Politics and Theory Looking Baek but Moving Forward / 101 Clare writes further on the lack ofintersectionalityin radical disahility circles: This is the case for many people with more than one marginality, yet disabled organizers and academics in the field ofdisability studies negate our complex Unfortunately, not manydisabilityornondisabledprogressive groups identities. When disabled people are "run over" because ouridentities are omit- engage in multi-issue thinking and organizing that deeply embeds ted, it is no accident. These erasures occur for a number ofreasons: prejudice, disabilitypolitics into an agenda thatincludes race, class, gendlii'and ignorance and/oran attempt to distance a group from others in order to better sexuality.