The imperative to be able-bodied is ever-present. Well before I was diagnosed with the disabilities I’ve had all my life, it was my mission to be super-able at all times. For reasons I didn’t understand then — but that are very clear to me now — I always felt the need to prove how high achieving I could be, and how far above expectations I could soar. As one of my more insightful managers once said to me, “You only work at normal human speed when you’ve got the flu.” He wasn’t joking. I should have taken that as permission to slow down. I didn’t. And while I take better care of myself now, rest when I need to, and set reasonable expectations for my body, I still find it difficult to not exceed expectations. The habit is both deeply ingrained and constantly reinforced from the outside.

I’m always of two minds about the levels to which I push myself. On the one hand, I like challenging myself, physically and intellectually. On the other hand, I’m not sure that I always like where the impulse comes from. All too often, I’m aware that I feel I’ve got something to prove.

So it was with a pang of recognition that I read a MailOnline story about a woman named Claire Lomas who, this past May, walked the London Marathon wearing a ReWalk exoskeleton. Ms. Lomas had been an accomplished horsewoman before she was thrown from a horse in a riding competition and became paralyzed from the chest down. The ReWalk device enabled her to stand upright and to walk, with arm crutches, the entire 26 miles, over the course of 16 days.

Now, I make it a point to refrain from advising disabled people on how to live their lives, and I don’t feel a particular need to judge whether or not it was a good idea for Ms. Lomas to walk the marathon route. If she felt that walking 26 miles in an exoskeleton was a feat she wanted to accomplish, I feel inclined to support her, although I’m unhappy that she did it to raise money for a cure that may never come, rather than for services to support disabled people in the here and now. For the purposes of this piece, though, what concerns me is not what Claire Lomas the Athlete did, but the way in which Claire Lomas the Story is being written. I’m deeply troubled by the way in which her story has been spun, and by the way in which the ReWalk device is being hailed as the solution for what ails disabled people.

Some of the verbiage in the MailOnline article is rather astonishing in its praise for Ms. Lomas’ accomplishment. The word “heroism” appears twice, and the word “heroic” once. She “conquered” the course, the article crows, after being “liberated from a wheelchair.” (Harris and Thornhill 2012) I’m used to hyperbole from MailOnline, but even the more moderate news outlets couldn’t help but gush. For example, note the way in which an ABC News article describes the feelings of the crowd that had gathered to cheer on Ms. Lomas on her final day of walking:

But they all were there for her, inspired by her determination to finish the race, inspired by her becoming the first woman in a robotic suit to complete a marathon, inspired by her ability to, as she told ABC News today, “just keep persevering.” (Shifrin 2012)

It’s simply not possible, it seems, to cover the accomplishments of disabled athletes without using a variation on the word inspire. But all of this terminology really begs the question: What is so heroic about walking 26 miles over the course of 16 days? What precisely has Ms. Lomas conquered? Why is she considered so inspiring? And how is it liberating to wear a seven-pound suit that enables you to walk between one and two-and-a-half miles a day, only to leave you “aching with pain” and “struggling to stay upright”? (Harris and Thornhill 2012)

The answer: To the able-bodied public, Ms. Lomas heroically battled against her disability and conquered it. She stood upright and walked. She didn’t use a wheelchair, the universal symbol of disability. She became as able-bodied as possible. And for this feat, accolades have poured in from all over the world, and people have considered themselves inspired.

After reading about Ms. Lomas, I decided to find out more about the ReWalk exoskeleton and how it’s being addressed in the media. What I found were sentiments mired in entirely uncritiqued attitudes about disability. For example, let’s look at a March 12, 2011 article in The Economist under the following headline:

The right trousers
Robotics: An artificial exoskeleton, akin to a pair of robotic trousers, promises to bring hope and dignity to paraplegics by letting them walk (The Economist 2012)

Or, to put it somewhat more directly: If you can’t walk on two legs, you are shameful and hopeless. If you think the article gets worse from there, you’re entirely correct. It begins:

CONFINEMENT to a wheelchair is not merely frustrating and degrading. It is positively bad for the health. People confined to wheelchairs often suffer urinary, respiratory, cardiovascular and digestive-system problems, as well as osteoporosis and pressure sores (The Economist 2012).

Note the use of the word “confinement” — a term altogether in contradiction to the experience of millions of wheelchair users who report that a wheelchair liberates them by giving them mobility. Note the appalling idea that using a wheelchair is “frustrating” and “degrading.” Why should sitting in a chair with wheels that brings you from one place to another be frustrating and degrading? The reason: It is a sign of disability. It is a sign of not being as able as possible. It is a sign, according to the writer, of a host of devastating physical problems to which the ReWalk suit is the answer.

The idea that walking around with a seven-pound ReWalk system is healthier for your body than using a wheelchair is wishful thinking, to use the kindest phrase I can summon. Given that the ReWalk device hasn’t been used by very many people for very long, there is absolutely no evidence to support this idea. But of course, the issue isn’t whether the device is actually healthier. The issue is that the device is being hawked to make people appear healthier — that is, without disability. Note the way in which it is being marketed by its creator, Eric Goffer:

Dr. Goffer says his aim is to enable paralysed people to lead normal lives. As well as giving users the ability to walk, the device also helps them regain their dignity (The Economist 2012).

So, all you have to do is wear a bionic suit, and you will live a “normal” life (whatever that means) and walk (literally) in the light of dignity. I’m not sure how this sort of magic works, especially given the fact that no one is going to overlook the presence of a bionic suit and arm crutches when assessing whether a person is “normal” and thereby worthy of respect, employment, housing, services, companionship, and basic human rights. But from the perspective of the writer, the simple act of walking gives one dignity, while the simple act of sitting robs one of it. Who knew it was that easy?

In order to maintain this mythology, the imperative to be as able as possible is placed firmly on the back of the disabled person. Able-bodied people needn’t bother themselves to help, as the writer makes abundantly clear:

When someone is in a wheelchair his head is at the height of an average person’s waist. This literal diminution of his stature can reduce his metaphorical stature, too. Once able to stand up, his stature, in both senses of the word, is restored—and that can be just as valuable as the health and mobility benefits (The Economist 2012).

In other words, under no circumstances could able-bodied people be expected to expend the effort required to use their able bodies to sit down and be at eye level with a person in a wheelchair. No. Perish the thought. Instead, a person who is paralyzed has to wear a $120,000 bionic suit in order to stand up. Could the imperative to be as able-bodied as possible be any clearer?

I worry about these kinds of articles, for a host of reasons, not the least of which is that people who could benefit from the mobility a wheelchair offers simply refuse to use one because they have been made to feel ashamed. Along these lines, Dave Hingsburger recently wrote about a conversation he had with a woman who said that her aging mother was too proud to use a wheelchair, and that she admired her mother’s attitude — despite the fact that the woman’s “pride” was rendering her housebound. Dave’s response was a reminder of the way in which the imperative to be able-bodied can hold us prisoner:

I suggested to her that maybe the fact that people admire her for clinging to non-disabled status is what keeps her clinging to non-disabled status. Maybe the idea that using a wheelchair involves a loss of pride rather than a gain of mobility is what keeps people shut in. (Hingsburger 2012)

The adulation over the ReWalk device is just one example of the public shaming of people with disabilities, and it has significant consequences. People would rather be shut in than be seen in public in a wheelchair. People would rather live in fear and self-hatred than become a visible part of the disability community.

The only alternative to this kind of shaming is pride. As Dave Hingsburger says so eloquently:

We need disability pride because people seem to assume we live with disability shame (Hingsburger 2012).

Indeed.

Sources

The Economist. “The Right Trousers.” http://www.economist.com/node/18304226. March 10, 2011. Accessed June 6, 2012.

Harris, Paul and Ted Thornhill. “Give Claire a medal! Tim Henman leads calls for organisers to reward paralysed marathon ace who finished Marathon in 16 days… as she raises £130,000 for charity.” MailOnline, May 10, 2012.  Accessed June 6, 2012. http://www.dailymail.co.uk/news/article-2141302/Claire-Lomas-Paralysed-woman-completes-London-Marathon-bionic-suit.html.

ReWalk Bionics Research. http://rewalk.us/about-2/. Accessed June 6, 2012.

Rolling Around In My Head. “Throne of Shame.” http://davehingsburger.blogspot.com/2012/06/throne-of-shame.html. June 7, 2012. Accessed June 7, 2012.

Shifrin, Nick. “Paralyzed Woman Finishes London Marathon.” ABC News, May 8, 2012. Accessed June 8, 2012. http://abcnews.go.com/International/paralyzed-woman-finishes-london-marathon/story?id=16304503#.T9I447UdM9B.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

© 2012 by Rachel Cohen-Rottenberg

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In the paper “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability,’” Margaret Byron and her colleagues discuss a study they carried out to assess the concepts, descriptors, and images that medical students associate with disability. With a twofold purpose of understanding how better to teach medical students about disability and determining whether a short course would change the way that medical students think about the issue, the researchers analyzed the words that students associated with disability before and after a four-day course. They found that before the course, the students tended to use negative and depersonalizing terms associated with loss, victimization, and the medical model of disability (which holds that disability derives solely from impairment in the body), and that afterward, they tended to use more positive terms associated with personal empowerment and the social model of disability (which holds that disability is the result of inaccessible architectural and social environments). While the authors’ research is cause for cautious optimism about the potential of a disability course to change hearts and minds, Byron and her associates fall short of a more rigorous analysis that would move past the problem of language and into the social construction of disability that underlies language. In the study, this problem manifests itself in three ways: in the uncritical assumption that certain words, when applied to disabled people, are inherently positive or negative; in the idea that one should attempt to see the person, not the impairment; and in the ways in which the students interacted with disabled people.

At the time of the study, the lead researcher, Margaret Byron, was a Senior Lecturer in Disability at the University of Bristol and the Project Director for Partners in Practice, where she worked to create equality in healthcare for disabled people; not surprisingly, her aims in the larger world inform the purpose and the methods of her research. For the study, carried out between 1996 and 2000, four sets of students participated in a four-day course taught by fourteen different teachers, eleven of who were disabled. While 381 students began the course, only 189 completed it. Before and after the course, the students wrote down two words that they associated with disability. Two professionals associated with the course used statistical analysis to analyze the words according to frequency of use and a series of dichotomies that consisted of a) symbolic icons versus personal qualities, b) the language of loss and deficit versus the language of empowerment and ability, and c) the medical model versus the social model. The purpose was to discover whether the words the students associated with disability changed after they had participated in the course. In 1999, the researchers also held a focus group before and after the course, in which a small number of students participated in open-ended discussions on disability issues (Byron et al. 2005, 176-179).

The results of the study showed a shift in the students’ associations with disability from concepts embedded in the medical model to those embedded in the social model. Before the course, the majority of the words used ten times or more included words associating disability with pity, difficulty and suffering, while after the course, the majority of the words used ten times or more were associated with empowerment and independence (Byron et al. 2005, 179). Moreover, the dichotomies shifted significantly. The use of depersonalized visual icons to describe disabled people (“wheelchair,” “white stick,” “orange badge,” “bobbles on the pavement”) shifted from 29% of the words to 7%, while terms associated with personal qualities increased (Byron et al. 2005, 180-182). In fact, terms denoting what the authors call “positive” personal qualities (“strength,” “capable,” “real people,” “normal person,” “your average Joe”) increased by 44% and terms associated with what they deem “negative” personal qualities (“dependence,” “inadequate,” “suffering”) decreased by the same amount (Byron et al. 2005, 180-182). In addition, words associated with loss and deficit decreased by 33%, while words associated with empowerment increased by 42% (Byron et al. 2005, 180). The shift was summed up in a 27% decrease in the use of the medical model, and a 39% increase in the use of the social model (Byron et al. 2005, 180). While noting that these changes might have derived simply from the students parroting back new concepts after the course, the researchers conclude that the changes are inherently positive and bode well for future courses on helping medical students view disability differently (Byron et al. 2005, 182-183).

From my perspective, however, a failure to grapple with several core issues makes the researchers’ conclusions questionable. For example, the study suggests that the term “normal person” has positive implications (Byron et al. 2005, 182), while the word “dependence” has negative implications (Byron et al. 2005, 180). But only in an ableist society would the word “normal” carry a positive valence; as Lennard J. Davis points out in “Bodies of Difference: Politics, Disability and Representation,” the concept of normal exercises a great deal of social and psychological tyranny over people’s lives because it is a simply a statistical average and a social construct that cannot be attained by anyone. As Davis writes, the construction of the category of normal creates the marginalization of disabled people:

Under normalcy, no one is or can be normal, just as no one is or can be equal. All have to work hard to make it seem that they conform, and so the person with disabilities is singled out as a dramatic case of not belonging. This identification makes it easier for the rest to think they fit the paradigm (Davis 2002, 105).

Moreover, only in an ableist society, in which the values of individualism and independence are held in high esteem, could a term like “dependence” take on a negative valence. Dependence on others for help need to not be seen as infantilization, helplessness, or tragedy, but as an indication of the interdependence of all human beings and as a reflection of a basic human need for assistance and comfort. The failure of the study to investigate the implications of these types of words lessens its usefulness is terms of understanding how to change thinking about disability.

In addition to not addressing the ableist implications of words deemed “positive” or “negative,” the authors of the study fail to consider one of the most troubling aspects of the ways in which people have attempted to address the issue of terminology: an insistence upon person-first language. The logic of person-first language is to put the person before the disability; proponents of person-first language use the term “person with disabilities” rather than the identity-first language of “disabled person.” The underlying idea of person-first language is that one should “see the person, not the disability.” The study by Byron and her associates echoes this kind of thinking; in commenting upon the students’ increased use of terms describing “positive” personal attributes, the authors note that this outcome “fit well with the aims of the course, which were that the student should see the person, not the impairment, and should understand the social model of disability” (Byron et al. 2005, 182). However, inherent in person-first language is the implication that disabilities render one less of a person. After all, why say, “See the person, not the disability” rather than “See the person and the disability,” unless disabilities seem somehow dehumanizing? Moreover, person-first language asks the speaker to not see what is already apparent: a difference that has a significant impact upon a disabled person’s everyday experience. This type of denial is not a feature of the social model of disability, whose adherents tend to prefer identity-first language and to be seen as fully human with their disabilities, not despite them (Shakespeare 2010, 268-269). Thus, in their uncritical acceptance of the imperative to separate the person from the disability, the researchers fail to address the negative view of disability that underlies this approach and do not realize the extent to which it conflicts with the social model.

Finally, while the authors seek to break down barriers between medical students and disabled people, they do so in a way that continues to make disabled people seem alien and apart. For example, they provide opportunities for the students to interact with disabled people, but their methods make these visits akin to a special field trip or exhibit. The point of the interactions seems to be for able-bodied students to learn about the patients’ disabilities, not to befriend them, to spend time with them on their own terms, or to learn about their lives as disabled people in an exclusionary society. Instead, the emphasis is medical — which is understandable, given the context, but not particularly useful in terms of changing perceptions of disabled people as simply having defective bodies in need of care. The response by one student in a focus group shows the continued impact of the medical model even after a four-day course based on the social model. The student depersonalizes the disabled people she had come into contact with during the course by referring to them by their disabilities only: “It’s good that you can kind of pick what you enjoy doing. Like today you could have picked either learning, or vision or hearing and you can pick what you enjoy and what you want to learn more about, which is good.” (Byron et al. 2005, 182) In other words, the student learned about the patients’ medical conditions — their learning challenges, their sight, their hearing — rather than about the patients as whole people in a social context.

No amount of changing the language about disability will change the position of disabled people in society without serious attention paid to underlying attitudes. While I applaud the work being done to help people talk about disability differently, that work is only the beginning of a long process of understanding how people think about disability and why. As S.E. Smith writes in “Language Matters, But It’s Not the Most Important Thing,” the issue “isn’t the word, it’s what lies behind it. It’s what the word reinforces and reveals.” (Smith 2011)

Sources

Byron, Margaret, Zoë Cockshott, Hilary Brownett, and Tina Ramkalawan. “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability’.” Medical Education 39 (2005): 176–183. doi:10.1111/j.1365-2929.2004.02062.x.

Davis, Lennard J. “Bodies of Difference: Politics, Disability and Representation.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 100-106. New York, NY: Modern Language Association of America, 2002.

Shakespeare, Tom. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennard J. Davis, 266-273. New York, NY: Routledge, 2010.

Smith, S.E. “Language Matters, But It’s Not the Most Important Thing.” This Ain’t Livin.’ February 24, 2011. Accessed May 20, 2012. http://meloukhia.net/2011/02/language_matters_language_matters_but_its_not_the_most_important_thing.html.

© 2012 by Rachel Cohen-Rottenberg