Ten years ago, I wrote an article in the Los Angeles Times about my experiences as a stroke survivor and “stroke prosperer.” (If that’s not a word, I hereby invent it now.) The article detailed my experiences from the initial headache through botched diagnoses, renewed marriage vows, divorce, recovery and rediscovery of who I am.
Yes, I came out stronger. Yes, I learned who my true friends are. Yes, I learned how family can bond together in ways unfathomable to me until that moment. I also came to learn that my recovery would be, and still is, made more difficult by the inherent sexism of inanimate objects—specifically, in wheelchair design.
I had faced down many of the disadvantages that come with being a woman, and I had been more than willing to fight to rise about above them. But having to fight against an inanimate object was not something that had occurred to me. We cannot avoid the myriad of empirical proofs that the patriarchy continues to do its best to limit, or at least minimize, women. The #MeToo movement and the sexist part-time occupant of the White House make it clear that women are still considered second class citizens, and that our opinions and safety don’t really matter to the culture at-large.
When those inequities intersected with the way that others perceive people in wheelchairs, I found that my status in society was lower than I had ever imagined.
Wheelchairs have been around for centuries—and, according to some scholars, for millennia. Early iterations were designed mainly to transport the wealthy, but things shifted in Germany in the 18th century, when “invalid chairs” were developed. They were still geared toward the moneyed elite, and they were also very much designed solely for men—both as injured soldiers returning from the battlefield and as a way to transport “important persons” of the time in style and comfort. (Meaning men, if one requires a translation…)
These early wheelchairs were similar in design to armchairs, and they were dependent on a person pushing the patient. Wire spoke wheels and rubber tires made things lighter and easier, but it wasn’t until the cross-frame folding wheelchair design of the 20th century—crafted by the disabled mining engineer Herbert A. Everest—that independence for wheelchair users was actualized. Unfortunately, Everest’s frame was still built for men, designed according to his own needs, and while numerous alterations, developments and improvements were made throughout the next hundred years, they focused on lessening the weight, making them sturdier and forging them to become increasingly reliable—but not necessarily female-friendly.
This might explain why my experience has been frustrating beyond measure. As a stroke victim with limited usage of my upper body, I find myself slipping in a standard design wheelchair. (Battling with Medicaid to get the proper wheelchair would also constitute another article, and perhaps a book.) I have yet to find a design that takes into account my body shape, and I know, from friends in my disabilities group, that I am far from alone. Yet as I began researching the subject, it quickly became clear that there is widespread denial about the issue in the medical community, despite an overwhelming amount of anecdotal evidence from female wheelchair users. I was unable to unearth more than a few limited studies on the ergonomics of wheelchairs, most of which found that manual wheelchairs were less than ideal and often kept in “deplorable mechanical conditions.”
Conversely, the degree of complaints from women in wheelchairs, whether adult or childhood users, prove that the basic design is geared toward the male user—including the seat angle, lack of ability to adjust said angle, back design and even the foot rests that don’t accommodate high heeled shoes (which, believe it or not, disabled women sometimes want to wear). There is no headrest that accommodates a variety of hairstyles. Chairs are not equipped with safety clips to keep long skirts from getting caught in the wheels. And aesthetics that address femininity purely infantilize it—think pink and lavender armrests.
“Chairs are not made for a woman’s butt and hips,” attorney, former Miss Wheelchair North Carolina and current MPA Candidate at Harvard Kennedy Business School, Ariella Barker, offered. “When I was going through puberty, I was having a hard time sitting with the correct posture because my butt was growing, and my cushion and shape of the chair didn’t account for this—so it made me sit too far forward, causing back pain. Shock systems aren’t really a top priority. But for woman, going over uneven pavement or grass, gravel… our breasts bounce, and it’s terribly embarrassing.”
To be fair, there are fully adjustable electric wheelchairs out there that solve most of the issues—for the wealthy patient. For the rest of us, the glaring sexism sticks.
Chris Fawcett, an inventor and former Steadicam operator working on creating an “elevated walking chair” called a Zeen, surmises that wheelchairs have been around so long that their flaws have been grandfathered in—used and reused in contemporary designs without undergoing the thorough testing that one would expect for a medical device. (Fawcett is determined to conduct his own tests in order to get better answers, and there is much cause for optimism in the new designs put forth by his company.)
“I feel once the lens of disability is shifted, and people see ‘us’ in more of a equal light, a lot of people will want to be involved in the wheelchair game with new designs—at least that’s what I hope for,” Tatiana Lee, an actor and blogger, shared with me. “It’s hard at this point, with only having maybe four popular wheelchair companies, and they all have their own esthetic that I can totally see as being more male-driven.”
I’m not as optimistic as Lee. As we’ve learned over the past couple of years, complacency is not an agent of change. Raising the issues and raising our voices is the only way things will evolve. These concerns must be brought to the public’s attention. Universities and research groups should study the problem. Hospitals should address these inequities in experience.
The fact that over half the population continues to suffer unnecessarily because of poor design choices is unacceptable.