The line between compassion and pity

Last Sunday, the New York Times ran a feature on a young woman, Stephanie Smith from Minnesota, who became paralysed and brain-damaged after eating a home-cooked hamburger contaminated with a virulent strain of E-Coli bacteria. Such bacteria gets into the meat because of poor meat hygiene at the processing plants, which allows excrement to get into the sold product, and because ground meat often contains cuts from all over the country and even abroad. The article was also accompanied by a video, which begins and ends with interview footage with Smith, in which she is sometimes visibly upset by her situation. This caught the attention of some disability bloggers including the authors of Bad Cripple, Wheelchair Dancer and Planet of the Blind. These bloggers stressed that the NYT feature had made out Smith’s paralysis to be more of a tragedy than it actually was.

What caused particular offence was the accompanying video, in which Smith is shown talking about her experience of being ill and its results. William Peace (Bad Cripple) complains:

When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction—pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: “I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing”. Oh, please spare me the melodrama!

Having watched this section of the video (from 7:49 onwards), I would not say that Ms Smith was “tearfully expressing herself”, because when the footage of her lifting her paralysed legs out of bed cuts to her actually talking to the camera, it is clear that Ms Smith is not tearful at all, and shows some humour about her situation, as shown in the bit that Peace has cut out of the quote:

I just know I have to work at it. I have to get somewhere and put everything into it. I know I will; I know I’ll be back to me, not so old me as I guess I was a lot bitchier (laughs), but I know I will walk again …

The tears start flowing when the topic of Cargill themselves comes up, which suggests that her emotions are mainly focussed on them rather than on her disability. She still has hope, even if her doctors believe her hope is false. If anything, the tone of the voice-over and music draws the watcher’s attention to this fact — that Smith cannot face up to the reality of her situation — rather than inviting him or her to pity her simply because she is in a wheelchair. Whether this justifies the description of her life as “shattered” is a matter of opinion; certainly the old life she enjoyed was rudely snatched from her by some large company which cut corners with hygiene, putting their customers’ lives at risk in order to cut costs. This illness does worse than paralyse people; others, including children, have suffered painful deaths.

There are two main problems with Peace’s analysis of this video. One is that, in condemning it for making her disability out to be a tragedy, he confuses a feature on newly acquired disability with one on ongoing disability. If a newspaper were to run a feature on a quite capable person who had been living with paralysis or, say, blindness for years and made every occasion where their disability made itself felt to be a fresh tragedy rather than an inconvenience, perhaps long after they had come to terms with their condition, then this would be demeaning and dishonest, and any anger would be quite justified. That is not the case with this video, which captures the emotions of someone coming to terms with a new disability. Much the same is true with any other traumatic event, such as the loss of a loved one: the event itself may be a tragedy, but the whole of one’s life afterwards need not be.

The second is that his whole analysis of why this woman is distressed is wrong:

Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states “She will most likely spend the rest of her life in a wheelchair according to her doctors”. What the voice over is really saying is that Ms. Smith’s life is ruined. Using a wheelchair is a fate worse than death.

Does he really think Smith is distressed at being paralysed because she has internalised prejudice against disability, or people with disabilities? I hardly think so. Different people deal with this eventuality in different ways, but some are more traumatised by the onset of disability, whatever it is, than others, but regardless of how many positive disability role models one has, it will usually be a very difficult adjustment and a few tears here and there are quite understandable. Will I adjust easily to being blind as a result of having known Ginny Quick for several years, or to a high-level spinal cord injury after hearing Kimberley Robbins cheerfully explain how she became quadriplegic one night in 2004? Not likely. If I’d become that severely paralysed at that age, it would have been a devastating and bitter loss for me, even as a sighted person (which she is not). I recall reading Nicola Naylor’s book Jasmine and Arnica, in which the blind author describes a trip to southern India in which she sought massage techniques she could use in her practice. By the time she wrote the book, she had developed a fulfilling career to replace the journalism which became impossible when she lost her sight, but in the years immediately afterwards, she was sometimes so traumatised that she had to be hospitalised.

The simple reason Stephanie Smith finds her disability distressing is that paralysis is bad (as is brain damage). You do not need to have ever seen a single pitiful TV image of a disabled person to know that. In fact, most people know only a few of the ill-effects of paralysis, such as not being able to walk and loss of sensation; they do not know about chronic nerve pain, or spasms, or osteoporosis, or incontinence, or inability to regulate body temperature, or sleep disturbance, or loss of sexual function, and as for autonomic dysreflexia, in the words of Victoria Brignell, “if you stopped five people in the street and asked them what autonomic dysreflexia was, one would claim it was a 1970s pop group, another would say it was a Doctor Who monster, and the other two would admit they didn’t have a clue” (that only makes four; have one in five people really heard of it?). None of these has anything to do with ableism or prejudice. Perhaps Stephanie Smith has some or all of these side effects, but it is clear that being unable to walk and, particularly, dance causes great sadness to her even if, for some paralysed people, it might seem a minor annoyance compared to some of the other effects. Perhaps, in time, she will find wheelchair dancing as fulfilling as she previously found dancing on her feet, or perhaps she will find some other pastime, but it shouldn’t be expected that someone should always just reach for something else if one thing is snatched away from them.

Stephanie Smith is also a woman, and women show emotions more readily than men, which might explain why she displays sadness rather than simple anger, as a man in the same situation might do, and might explain why the male author of Bad Cripple does not see eye to eye with her. His attitude reminds me of a type that anybody with an institutional past will recognise: someone who has been in the institution for years and is disdainful of the distress of a newcomer, treating such people as mere irritating cry-babies. We might also consider that she is around two years after her injury set in; having had a friend of the family suffer a traumatic brain injury, I have heard that two years is around the time when progress stops, and I have also read comments and forum posts by Kim Robbins in which she said that the two-year mark was the hardest point in her life since becoming paralysed (here is what she wrote on her second anniversary). So perhaps, for her as for Kimberley, it is only beginning to sink in that her present state is permanent, and given that she has also suffered brain damage (we do not know how bad that is, or such things as whether she can still work), a little compassion and understanding, which is not the same thing as pity, would not go amiss. She is, after all, not asking people to help her kill herself; she is just emotional and upset, as anyone would be in her situation.

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