What Are We Missing?

If you’ve got RP, you probably spend part of your time explaining what you can’t see, but also assuring people of the things you can. Because we are losing vision in strange ways, right? Ways that cause other RP types to nod in agreement, while non RP types will answer, wait- I just saw you check your phone-so what do you mean you can’t see me standing beside you?

For me, and I think it’s pretty typical, actually, I was told “classic” (well, thank you)  I have a small circle of central vision and some, okay, many gaps-to the sides, above and below that see nothing, and then some peripheral vision at the very outer edges. So I miss a perplexing assortment of things. 

1. Handshakes. They happen below by usable central vision, so if I’m looking  eye to eye with someone, I don’t see the extended hand.  I do scan for it though, if I think we at getting to the part in the introductions where a person might go for a handshake. Sometimes I extend mine first, just so it’ll be done with and I can stop looking.

2. Whatever people are pointing to. I might see the shoulder go up, but that’s it. I have to follow the arm and hand all the way out with my central vision to see what’s being pointing to, and that usually takes longer than the person holds the position. What works best is for folks to say it in words. “Look at that tree” is much faster for me than “look at that.”

3. Wet floor signs. My family calls this kind of sign a “kick me” because if there is one anywhere around, I will kick it. I’ve decided to embrace this one. I try to look as if I enjoyed it. 

4. A darting toddler. This one makes me feel awful. I once mowed over a toddler trying to get through a crowd. He was fine, I was horrified and his mother was furious. And I should have explained it to her, honestly. I wish I had. 

5. Whatever is left in the middle of the floor. Thank goodness my kids don’t play with Legos anymore. Sometimes I see them skittering in from of me to move their shoes or a backpack. That’s love. 

6. My left hand, if looking at my right, and vice versa. I’m a pianist, and it’s turning into a challenge. I’m working on playing with my eyes closed anyway. Great pianists throughout history have played with their eyes closed, right? Doesn’t it connote special concentration or depth of feeling? Or something?

7. Unexpected steps. I know. This is what a cane is for. I’m working on wrapping my head around that truth. But still, would it hurt to put those helpful stripes on the front edges of steps? Please?

8. Stars. I’ve never been able to see them. If you have RP, you’ve never seen them either. I remember seeing a movie showing stars when I was a kid and being baffled. I thought Hollywood was exaggerating, or that it was all a hoax-like astrology. Also stars, right?

9. Anything else in the dark. If you have RP, you get this too. It’s inky black outside and people are moving around freely. What kind of reckless stunt people run around in the dark? Oh, that’s right. They can see. 

10. The whole movie screen at once. If you are ever looking for anyone you know at the movies, if they have RP, they’re in the back row. I promise. 


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.