Society’s Fear of Blindness

No one ever told me that grief felt so much like fear. –CS Lewis
Fear is a driving force in the characterization of the blind in our society. Losing sight is statically more feared than deafness or loss of limb, ranking fourth behind AIDS, cancer and Alzheimer’s disease. ( It’s a physical loss that is damned scary. But something more is afoot in our world-because society’s characterization of blindness is rarely limited to physical loss. Instead, blindness has an implicit relationship with character, and always has. With our words, our myths, and the literature spanning centuries, blind are routinely cast as being extreme in character, whether evil, wise, inept, virtuous, wicked or tragic. Society continues to perpetuate and actively clings to this damning misconception. Why? By casting blind persons as extreme in character, they bear little resemblance to the sighted’s sense of self. Even more damaging, by recasting blindness as a predictable consequence of moral defect, society means to assure itself that blindness is not random but earned. In other words, it won’t happen to them.

It has been said that history is a record of what we have done and literature, a record of what we think.  Well, crap. Even a cursory glance at literature shows an unapologetically extreme view of blindness and the blind. The blind are evil in Stevenson’s Treasure Island, stupid in Shakespeare’s King Lear, confused in the Old Testament with Isaac, vapid in Charles Dickens’ “Cricket on the Hearth”, and the most pitied of characters, in Schiller’s William Tell, Kipling’s “The Light That Failed”, Conrad’s “The End of the Tether,” and D.H. Lawrence’s “The Blind Man.” And then there’s Greek tragedy. Here blindness is strongly associated with shame, usually a punishment for sins against authority or for sexual deviance. Think Metope, blinded as punishment by her father, or Polymestor, blinded for murder, or Alcmena, whose eyes were mutilated as a humiliation. Erymanthos was blinded after he saw Aphrodite bathing. Stesichorus was blinded for insulting Helen. Orion was punished for rape. For Oedipus, blindness was a punishment for incest. Shakespeare’s Gloucester was blinded for adultery. Even today, the myth that masterbation can result in blindness is perpetuated. The culture concerning blindness around the time of Christ is summed up in the ancient Hebrew saying, “Better off dead than living blind” and it is from this perspective that the disciples ask Jesus, “Rabbi, who sinned, this man or his parents, that he was born blind?” Neither, was the notable answer.

One could argue that many sighted characters in literature are portrayed as evil, confused, inept, corrupt and vapid too. That is true. The important distinction is that sighted characters run the gamut, from balanced to extreme, simple to complex, and in whatever way the author chooses to stunt the character’s development, it is not implicitly linked to a physical disability. By contrast, blind characters are most often two dimensional figures, lacking complex relationships: stock characters that are bloodless conduits of disability, and deserving of it.

Seem extreme? It is. Webster’s dictionary has eight definitions of blindness. The first speaks to an inability to see, physically. The second, third and fourth: lack of discernment or judgement. The fifth: defective.  Perhaps our dictionary’s definition of ableism could reference its own definition of blindness.

The obvious point is that the myths are untrue. Blindness is a physical state, and nothing more. There is seldom anyone to blame for a physical challenge, and those with an impairment are no different in temperament or character as whole than the rest of society. Yet, our world implies otherwise, in a white knuckled grasp at self preservation. It’s instinctive to comfort ourselves with differences between others and ourselves. When we hear that someone has lung cancer, we ask, “Did he smoke?” especially if we don’t. Random shootings are more disturbing to us than acts of domestic violence, even if the casualty numbers are the same. The obituaries that trouble us are the ones nearest our own age. The homeless person must not work as hard as we do. Distance and blame are our protection from vulnerability. Or so we think.

But it’s not working.The myths about blindness do not reduce anyone’s anxiety about blindness-blind or sighted. It intensifies fear. When blindness is seen as a dehumanizing condition, anxiety toward blindness rises, because the very dehumanization wielded as a protection is the greatest source of anxiety. Isn’t this powerfully acknowledged every time society employs it as its ultimate distancing tool?

In the end, the narratives about the tragedy of blindness have little to do with being sightless.

If there is tragedy in blindness, it is that it can stand between a person and his fully evolved potential, complete with authentic understanding, given and received. If there is virtue in it, it is that the vulnerability of it could be used to connect authentically with the parts of life a person holds dear. Either way, the blindness is not the problem or the prize. Being physically sightless is what it is, but let us not create the tragedy of ableism by misrepresenting visual impairment as something more than a physical condition. And let us not create tragedy within the sighted by chasing self preservation at the expense of humanity. This game has no winners.


Simulated Blindness Experiences: There’s Bad News and Good News

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.

Five Misconceptions about Blind People

1.  They can’t see anything. Counterintuitive, right? But truthfully, only a small number of blind persons can’t see anything at all. Many of us have terrible acuity, or very narrow feels of vision. Some can only see motion, or light. There are many degrees of blindness, and only a small percentage of them is the darkness you are imagining.

2.  They don’t want to talk about it. Nope. We already know we’re blind, and in as much as it creates understanding and inclusion, we’re happy to talk about our vision. I promise. Of course, we want to talk about other things too. Just like you.

3.  They aren’t smart. Here’s the problem, and one of my biggest gripes. Blind people miss visual cues, so there’s some stuff they can’t know. Our inability to see is not the same as an inability to understand. I know it can look inattentive. It’s anything but.

4.  They are victims. All people are on a sliding scale with this one. You probably know people who feel victimized by rainclouds and others who grateful for their messy, complicated lives. Feeling victimized isn’t about blindness.

5.  They are heroes. People are on a sliding scale with this one too. They may be heroes, but it probably has nothing to do with their blindness.

The only true assumption you can make about a blind person is that their vision is crappy. Anything else you discover is probably more about the person and less about the blindness.