Claire Lomas, promoted by the media as the “Bionic Woman” just made history and sparked inspiration by completing the London Marathon in 16 days. Averaging about two miles per day, this woman with below-chest paralysis walked her 26.2 miles to finish proudly in 36,000th place. She did so with the help of a ReWalk suit, a supportive family, and the goal of raising money for spinal cord injury research.
The ReWalk suit resembles closely the Ekso suit that I wrote about previously and raises similar questions. They both enable people with spinal cord injuries to stand and walk. They are heralded by the companies as tools to enhance rehabilitation, mobility, and dignity. They also both leave me with the same uncomfortable uncertainty: is this progress or ableism? (See link above for a full delineation of this uncertainty and a lengthy discussion in the comments section).
Lomas completed 26.2 miles in 16 days. This is billed as a product of sweat, perseverance, and technological progress. Several years ago, I participated in my local MS 50 mile Challenge Walk[i] and saw people wheel 50 miles in 2.5 days. Some of them finished before I did. Let me be clear on my point here: Lomas’ determination, hard work, and dedication are to be admired. Hers was a hard earned feat and in no way do I want to take anything away from her accomplishment. I do, however, want to call into question the notion of “mobility.”
Is Lomas more mobile in her ReWalk suit, or is she simply more normative?
Let’s look first at an uncomplicated comparison between the wheelchair and the ReWalk suit as technologies of mobility: We will treat Lomas as a representative of ReWalk technology, and the wheelers that participated in the MS Challenge as representatives of wheelchair technology. Based on this comparison, we would have to conclude that the wheelchair is a far more efficient technology of mobility. Those using a wheelchair moved twice as far in a fraction of the time as the person in the ReWalk suit. Unfortunately, this comparison grossly oversimplifies the notion of mobility, as we do not live (or move) in a world designed like a race course.
To truly compare the technologies, we have to think about mobility in the everyday sense. We have to ask how each technology enables or constrains movement through public (and private) physical environments. How easy or difficult is it to attend school, shop for groceries, or enter a place of business? How often must a person decline social invitations, ask a stranger for help, or miss out on career opportunities? When we take this perspective, the conclusions get a lot blurrier. In this sense, the suit may well be more efficient than the chair. Indeed, in a world in which ramps are not universal, disability parking spaces are impractically located, elevators are sporadically available, and retail facilities have narrow aisles and high check-out counters, the option to stand upright could be irreplaceably valuable.
The question therefore returns to priority: improve the infrastructure or normalize the body? I do not purport here to have the answer, but instead, argue that we MUST ask this often ignored question. To do so, is to look with a harsh light at our assumptions and ingrained value hierarchies as we apply them to the bodily condition. Perhaps the rawness of this view is what keeps the question largely unaddressed.
[i] Ironically, when I looked up the MS Challenge website to insert this link, I noticed that The Challenge is explicitly referred to as a “Walk.” This language epitomizes an ingrained ableism. Here we have an event with a sizable number of wheeling participants, put on by an organization that works with people who will likely experience difficulty walking and standing (people with multiple sclerosis), that unreflectively privileges one form of mobility above others. I wrote them an email.