The Imperative to Be Abled: The ReWalk Exoskeleton

In his 2011 book Disability Theory, Tobin Siebers discusses the ableist cultural expectation that disabled people should be as able-bodied as possible. Nondisabled people, Siebers notes, are allowed to use an array of labor-saving devices, even when they are physically able to complete their tasks without them. When disabled people want to use devices to increase the quality of their lives, however, these devices are considered a drain on social resources and an unnecessary form of assistance. So while able-bodied people are encouraged to reduce their labor by means of such devices as washing machines and leaf blowers, disabled people are met with resistance when lobbying for ramps and elevators. In short, disabled people are expected to “maintain the maximum standard of physical performance at every moment” and “always present as able-bodied as possible.” (Siebers 2011, 31-32)

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.

References

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