Retinitis pigmentosa is taking my vision. So I’m adjusting. I walk rather than drive, and scan my surroundings to compensate for what I can’t see. I’m contemplating a cane. (Not yet.) What I’m discovering is that my impairment has two facets: the physical and the societal. And in all my thinking about what a significant visual impairment might be like, I underappreciated how remarkably negative the societal implications would be. Here’s why: society is getting a lot wrong about blindness and blind people.
As ancient as fear of the dark, blindness has always been among the most dreaded of conditions, and its associations are as strongly negative as the emotions that fuel them. Added to our ancient fears, we now have a modern source of anxiety and damaging stereotypes: blindness experiences. From dining in darkness, blindfolded plays and blindfolded concerts, people are being offered ways to experience the challenges of blindness. Sounds good, right? There are good aspects of it, certainly. It gets people thinking. In some cases, it raises money for research to cure the conditions that lead to blindness. This is exciting. I want them to cure blindness. But here’s an uncomfortable truth: events like these may be raising money while undermining dignity.
Simulations are quite different from blind life in presentation and execution. Most visually impaired are losing their vision gradually. It’s not a sudden moment. And most people who are considered blind still retain some vision, if just the ability to see motion, or perceive light. We adjust incrementally, physically and emotionally, and get training along the way. None of this is true for simulated blindness. Participants are submerged into complete darkness instantly with a blackout mask, and try a task-one they have probably only ever tried sighted.
What conclusions will participants draw from this? The risk is that they will find blindness overly negative, resulting in an overly negative view of blind persons. Since the advertised notion is that participants are experiencing blindness, they may reasonably conclude that their experience is a realistic recreation of blind life: that the blind are as anxious and incapable as they are. New research agrees. Simulations, “intended to be bridge-builders resulting in greater compassion and understanding-can sometimes harm rather than help. [They] highlight the initial challenges of becoming disabled [and] decrease the perceived adaptability of being disabled and reduce the judged capabilities of disabled people.” Of course it does. The fallout? The blind may have fewer opportunities for integration, both socially and professionally. Unhelpful.
But there’s more, and here’s where we go from unhelpful to distressing. Dining in the dark participants are encouraged to dispense using utensils to feed themselves. They are instructed to eat with their hands. Bridge building? This is the infantilism of an already under respected community. If these experiences are having success in getting a message out about blind persons, it is almost certainly the wrong one. Sighted are exposed to the most shocking version of blindness, and encouraged to respond to the challenge in a manner that is at best infantile, and is at worst, animalistic. This is marketed and sold as blindness awareness, to help the blind.
But then I read about a blindness experience that gets it right. I was so impressed that I contacted the instructor. Mickey Damelio, faculty member at Florida State University teaches a class called The Blindness Experience. It’s an elective, one as wildly popular as the beer and wine tasting class. Imagine. The difference between FSU’s Blindness Experience class and the experiences mentioned above, like blindfolded dining, is the difference between exploiting pity and shock of blindness and promoting meaningful understanding. The students who are lucky enough to get into this class experience a semester long challenge of blind stereotypes. They interact with fifteen guest speakers during the course, all blind: parents, Ph.Ds, a prosecuting attorney, a former phone sex operator. That’s right. The class participates in blind simulations too, but never for shock value. “When you first put on a blindfold, you almost can’t help but put yourself in that first beginning stage of grief. But imagine how well you would do with this after ten years of being blindfolded” they are reminded. The perspective offered here is not shallow or cursory. Damelio is himself an orientation and mobility specialist, and teacher of the visually impaired, and has headed up the orientation and mobility program at FSU since 2010. So why offer this class? “It’s a public service, really,” says Damelio. “The whole reason for the class is to give students so many experiences with blindness that they are unable to stereotype it. About mid-way through the semester students conclude that the idea of generalizing two people with a visual impairment is as ridiculous as assuming two people with blue eyes must be the same kind of person.” And if that isn’t a big enough sigh of relief for the visually impaired, Damelio has another goal. “Many of the students who take this class will be leaders and in a position to make hiring decisions. Changing the perception of blind people with these students may give blind people essential opportunities.”
Blindness awareness is a worthy goal, but depending on the perspective offered, it can help blind persons or make their lives difficult. Awareness activities that underscore shock do little to promote inclusion of the visually impaired community. In reality, it diminishes our opportunities to integrate socially and professionally. Hearing about courses like The Blindness Experience restores some equilibrium to the process of vision loss for me. If I can’t see well, being understood well may be the next best thing. When the perception of visual impairment has been limited to a physical challenge, only then we will be experiencing accurate blindness awareness. Interested in a blind perspective? Use the FSU model. Talk to lots of blind people. Talk about everything. Maybe even blindness.