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Martin Paul Eve

Professor of Literature, Technology and Publishing at Birkbeck, University of London

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When I was in hospital the week before last, I was struck by how all-pervasive the rhetoric of "fighting" is when people are coping with illness or new disability. I'm sure that this has been covered by those in critical disability studies far better than I can put it here, but I wanted to flag it up as an area of concern.

Army

I certainly know that, for pretty much my entire life, this has been the terminology deployed. Your immune system is an "army" which must repel the invading hordes. Kid's cartoons ("Once upon a time... Life") did this when describing immunity. When I was first diagnosed with rheumatoid arthritis, and almost always subsequently, it is described as the immune system going wrong and attacking one's own body. Letters to USA Today bemoan it when anti-(real)war rhetoric is put into wars against disease. Most recently, I saw this in the story of Rob Summers:

When he was in hospital, doctors told Summers he would never walk again, he said. "They said that I had no hope and to just give up. My comment was you don't know me very well. I'm going to fight until I get well again (The Guardian).

So what? Well, I think it's actually a hugely problematic discourse. It seems to come about because we, as a species, are obsessed with agency. Keanu Reeves, in The Matrix: "because I don't like the idea that I'm not in control of my life". Consider, though, that in every ten people who think that they have the power to "fight" cancer, four will not make it. Are the people who "fought" the disease trying to imply that they came out on top because they were stronger, better fighters?

Well, here's some news for you: you may enjoy your time on Earth more if you are optimistic but, in the case under discussion (cancer), it has no bearing on whether you will live or die. It actually comes down to chance, pure and simple. It is chance how malignant your cancer is and it is chance as to whether it will respond to chemo-/radio- therapy.

Let's take another example, well known to me. Rheumatoid Arthritis is a serious autoimmune disease (not to be confused with osteoarthritis) which primarily sees an immune response mounted against the joints, but also causes inflammation of internal organs, blood vessels, the nervous system and induces serious fatigue. In my day to day existence, when I am in pain, I have to maintain a positive attitude -- and this sometimes crosses over into aggression, the type of aggression you might need when weight lifting, for instance, to push yourself -- but, at the core level, a "fighting" spirit, a determination to "fight" this illness has not got me anywhere. In fact, in the early stages, it left me exhausted and very unwell because I was so determined to "fight". It was, perhaps, a form of grief for what I perceived as my old life. I would have done better to rest and let the drugs that now maintain me so well do their thing. Do people who want to "fight" RA think that their fighting attitude was stronger than mine? Do they think that it is their mental state that determines how bad their disease is? I can compare CRP scores if you like. Mine were >200 for several years. For those who don't know, that's a serious immune response. The normal level for someone without RA is 1, maybe 40 when you have flu. Fighting didn't help. The most prominent support network for RA deploys this exact terminology, though: www.rawarrior.com (EDIT 2011-05-25 14:36: just to clarify, Kelly's site is fantastic and I love everything she does, I am just using this as an example of the prevalence of the rhetoric). If it's the pain, why don't we say people are "strong in the face of", rather than "fighting"? You can't fight pain (that doesn't make sense), you are strong in the face of pain, and for the reasons of agency already mentioned you can't "fight" the disease.

Finally, the Rob Summers case is one of the most troubling at a time when the disabled face day-to-day attacks on the street. When this "fighting" rhetoric is deployed, people will start to conclude that those who are paralyzed are simply not trying hard enough. The truth is, of course, that this is rubbish. Rob Summers is incredibly lucky. He has not had total destruction of function and he has been given expensive and intensive medical help. Yes, his courage in the face of adversity is admirable, but if his luck were just slightly different, it could have made no difference and he would have been branded as just another "disabled-type" who could have done better if he'd fought harder.

This attitude is closely tied to neo-liberal economics, the American dream that anybody can overcome, through force of will, if they try hard enough. Of course, few here consider the prerequisites. It's far easier to succeed if you are blessed with a firm financial base, an education and so forth. In fact, by being born in America, you would already have been given an unfair advantage in life. Consider that the poorest 5% of America is equal to the richest 5% of India. The same will go for the United Kingdom. You (and I) did nothing to deserve this, pure chance just worked out in your (our) favour. To believe, therefore, that every success in your life is due to how hard you fought, is not accurate. Sure, hard work and a positive outlook are good things to foster, but the point is that not everybody is starting from the same level. Those with illnesses and disability can "fight" and not succeed because chance is against them, not because of any factor they could control and it could, at any point, be you in that situation. Indeed, many people with disabilities already do have to fight much harder than many people realise. They have to fight to overcome bigotry, they have to fight to overcome a society that makes only grudging concessions towards accessibility (the tyranny of the majority) and they have to "fight" their illness/disability under the rhetoric we currently employ.

In a world in which we already have too much aggression, fighting and competitive blaming, why don't we drop this discourse and give people one less thing for which they have to fight?

Featured image by familymwr under a CC-BY license.