Blasting Through the Hierarchy of Vision

Nik working at That Place He Works, is a bit of a blast from the past for me. From things like the fact that the staff there recently went to visit my training center in Nebraska as a model to exemplify (good sign…) to just having Nik ponder some ideas that are REALLY old that I haven’t heard of or thought about in years. The one that I’ve been thinking of lately is this age-old one:

In the Land of the Blind, the one-eyed man is king.

The NFB would call this The Hierarchy of Vision. The notion of hierarchy is that sight is always superior to non-sight and therefore, people with some vision should maximize that vision at all costs, because using vision, no matter how much you struggle, is superior than using alternative techniques of blindness. The NFB calls bullshit on this notion. And although they freely admit that vision can be a convenience and blindness can be a nuisance, they place no judgement at all on the amount of sight someone has in terms of whether they are “better off” than someone else. It simply is not a factor in self-worth. Furthermore, they look at blind rehab from the perspective that if you can do everything without sight, any sight you use is just gravy. So the way to handle partial vision is to basically treat it like blindness.

This seems to be an EXTREMELY hard idea for sighted people to understand. They seem to think of it as denying your vision or rejecting those with low vision. They sometimes think it is fraudulent that people with low vision may refer to themselves as blind. They really don’t seem to understand the advantages of teaching people with low vision the alternative techniques of blindness and see these skills as somehow inferior to using low vision methods (like enlarged screen readers or magnifying glasses.) As a person who has had low vision my entire life, I cannot even begin to tell you how liberating the philosophy that how much vision you have has nothing to do with your “better off-ness” or value as a human is. Because if I accept that I am better-off than a totally blind person, it inherently means that I am worse off than a sighted person. And to reject this inferiority catch-22 is in fact, magnificent. It is in essence, refusing to be defined by how much vision you have, and knowing your worth as a person.

The first time I ever heard of this philosophy that blind is blind is blind and it doesn’t matter how much you can see was when I first took a tour of the Nebraska Center when I was 16 years old. When introduced to one of the instructors there, he asked me how long I had been blind. Since HE was blind, I figured he couldn’t see that I wasn’t blind, so I told him, “I’m not blind.” He kind of laughed at me and said, “then why are you here?” It was confusing and kind of pissed me off.  Until this time, I never considered myself blind and was inundated through the school system with “Low-vision training.” This included years of being forced to try basically unhelpful stuff, such as yellow cellophane filters on mimeograph paper, large print that I had to practically lay all over my desk to read, magnifiers of all shapes and sizes, including a drafters table in the back of my classroom. Then there were all of these “eye exercises” like tracking a large maze with my eyes and looking at black marbles on black paper from a distance of several feet and trying to tell how many there were. All kinds of ways of trying to interpret the visuals you were getting. Meanwhile, my classmate in the “visually impaired” room was a totally blind girl who used a cane and was learning Braille. At least, I thought, she was doing real things like reading books and stuff. I was doing bullshit. But how could I say that!? She was an unfortunate blind person and I was not. I should feel sorry for her.

When I started getting home teaching from the Nebraska Commission, my first long white cane was put in my hand as I was supposed to walk down the sidewalk in front of my house. I was MORTIFIED. First, all my neighborhood classmates were going to see me looking like a BLIND person. Secondly, I felt like a fraud. I was NOT blind. Why would I use a cane? It was such a fake out or something. I complained to my mother who talked to my teacher about learning cane travel in a different neighborhood. So we literally drove to some unfamiliar neighborhood to do cane travel. But that only solved the first problem. My teacher pushed heavily for me to go to the training center when I graduated from high school. I was clueless about the whole thing. I just saw it as a way to get the hell out of my depressing suburb earlier than I could without going. I left home the day after I graduated high school.

So, my sleep-shaded blind skills training that followed has been documented elsewhere, but in that summer, I became a self-identified blind person without my sight changing at all. Back then, in the slangy vernacular of blindness, I would have been considered a “high partial”–a person with a LOT of usable vision. (other designations might be things like, Low partial, having “travel vision” having “light perception” and being a “total” with no sight at all. When you consider that only 10% of blind people are totally blind, you see why all the varying qualifiers don’t really mean much in the grand scheme of blindness advocacy and services.) Blind people do use some of these terms and recognize differences in vision, but they are all subsets of blindness and are not loaded with any sort of value statement about self-worth. But anyway, as a “high partial” it was a bit awkward for me to pull on the identity of blindness at first, but then I began to see how hard the identity I had been wearing had been, and it became a huge relief to shed it.

My whole life, I had been answering the question “How much can you see?” It is an impossible question to answer. First of all, for practical reasons. I have never been able to see like a sighted person, so I do not know how to tell anyone “how much I can see.” They say they can see everything. But no they can’t. If they could, we would not need vision enhancers like night vision goggles, telescopes, microscopes and the HUBBLE, would we? They can see what the average sighted person sees, at least as far as we know. I don’t have a concept of how you see the car down the street, so I cannot compare it to how I see the car down the street. Once I took Avery to an ophthalmologist and she asked me questions about how Avery sees things, whether he squints at things that he shouldn’t squint at, and I had to tell her, I don’t know. I don’t know what he should or shouldn’t squint at. I cannot compare it to anything. She kept saying things like, when he sees a familiar person walking toward him down the street, how close do they need to be to be recognized. I just couldn’t answer, because I was using different methods to tell if someone we knew was walking down the street, and did not know when Avery should recognize them.

Then people act like vision is some sort of linear continuum like the opening and closing of a camera diaphragm. But vision, and low vision is dynamic. It depends on things like lighting, peripheral vision, illness and fatigue, whether the eye disease is something like cataracts, or glaucoma or retinal disease. Although we have some crude quantifiers like the Snellen scale (20/20 and the like) and degree of peripheral vision (which assumes that peripheral vision can be sliced up like a circle and measured in circumference, when you could literally have spots missing from your vision) there is really no good way to quantify your vision for someone else. I used to joke that I was 17/32nds blind because everyone seemed to want my vision to be a quantifiable fraction of the whole so bad.

But the other problem is is that these questions, and whatever answer you come up with, seem to carry such value judgments for others. It is like, what if you were constantly asked by everyone, your mom to random strangers, your boss, your teachers, your classmates, your friends, the bus driver, the waiter, everyone, how much you weigh? Even if you don’t have a problem with your weight, either because your weight is considered “normal” by society or because you have risen above societal messages to not find your self-worth in your weight…everyone else is going to have an opinion. Now people will say that they just want to know how much you can see so they know how to interact with you. But knowing how much you can see (if that were even possible) does not tell them anything about how to interact with you. Do you read large print or Braille? Would you like a sighted guide or not? Would you like me to describe this painting for you? Those are pertinent questions that how much you see will not answer. It would be like people asking your weight in order to seat you at a restaurant. Even sales people at clothing stores are not going to ask you your weight. We all know people who are 140 lbs or 190 lbs that both wear the same size. It is irrelevant to any given task at hand. And it is no ones business anyway.

Why? Because essentially, whether they mean to or not, those questions are a way for people to put you into a category of “us” and “other.” Having been asked these questions all my life, I have noticed that my answers completely change how much acceptance I get. If I say that I can see a lot but can’t drive and have problems reading some print, I seem to fall into the “us” category. If–with the exact same vision–I say that I am legally blind and have a visual acuity of 20/800 and a field restriction of less than 20%, I get put in the BLIND “other” category. Both statements have been equally true (although, I have no idea what my acuity is now. But whatever…)

So, you might think that using the first description would make my life easier, but it doesn’t. Because then people assume that except for taking the bus, I go along like everyone else, and then when I can’t see something, like when we go into a dark restaurant and I need assistance, or worse yet, pull out a cane, they are SHOCKED! SHOCKED that I cannot pass for sighted. And it is kind of like, oh, you have a cane and we are going to get all this attention for it now, um…I didn’t sign up for this tonight. So then confusion and uncomfortableness come along and you get othered anyway. Or, you become the token game piece in a fun and entertaining game of “Let’s Test How Much She Can See.” (One of my first revelations was when I told my travel instructor that my parents would see how long it took for me to read highway signs as we drove by. They did not laugh at me, per se, but I could tell it was entertaining for them to see that I either couldn’t read them at all, or had to rush to read them at the last minute before we drove past. My instructor said, “And is it fun to be the one doing dog show tricks for your family?” And, um, no it wasn’t. And I had never thought of it before. And that blew me away. I did not have to do that anymore because my vision was my own and my business.)

But so much for blind identity. There are much more practical reasons to not get into the whole hierarchy of vision thing. Like getting by in life as a blind person, I think, is SO MUCH EASIER than getting by in life as a low vision person. I have been to many low vision specialists over the years, as well as my grade school vision teacher who essentially took on the role as a low vision specialist. And I have come to one conclusion: Low vision specialists are almost entirely worthless. They are gadget venders, and thats fine. There are a few low vision gadgets that do come in handy (which ones will be different for everyone), and it is nice to be able to try them out and get them from somewhere. But low vision gadgets have their place and time for use, and it is not at the expense of learning real blindness skills. They will simply never get you as far.

Why? First of all, most low vision people have unreliable, changing vision. (Actually, everyone has changing vision, but low vision people are especially prone to changes.) I do not understand why someone with say, retinitis pigmentosa or glaucoma would want to waste their time going the low vision route when they are going to lose their vision soon enough anyway. The low vision specialists take these people, get them all hooked up with gadgets, and then six months later, the gadgets don’t work anymore, so there are stronger gadgets, and then they don’t work. And then the person is constantly having to stop their life and readjust. And also the fear, the unrelenting fear of losing more vision and having to start all over again. Wouldn’t it be better to just learn how to do it the blind way and then to know that you do not need vision to move through your life? Then, if you want to add a few gadgets here and there, fine. But they should be ON TOP OF having the skills to do things without vision.

Having these skills of blindness as backup literally saved me on multiple occasions, but there are two that are most prominent in my head. One was my sophomore year of college, where a previous cataract surgery was causing a quickly increasing amount of scar tissue to develop in my eyes. I could no longer read any sort of print. I could have surgery, but it was risky and I could lose more vision or potentially have a long recovery period if I had a retinal detachment. At the time, I had been reading some print and using a CCTV, which magnifies text. What I did when those methods didn’t work anymore was to just switch over to my blind techniques. I did not have to quit school, I was able to wait until summer to have my surgery when it was more convenient if things went wrong, and my education went on absolutely uninterrupted. I could have fucked around for a wasted year of my life if I didn’t have the blind skills to just pick up and keep going. (The surgery worked and I was able to get some reading vision back.)

The second time was probably the most important time that having the skills of blindness saved me. And that was in the well-documented story on this blog of how three weeks before the twins were born, I had a retinal detachment. I had surgery and was almost totally blind (with some light perception) for the next year of my life. With the criticism that D and I got from hospital staff about whether we were going to be able to take care of our kids, I MAY HAVE LOST MY KIDS if I was fumbling around about my new total blindness. Some of my blindness skills were rusty, but as soon as the retinal detachment happened and I knew that I might never regain my vision, I GOT IN GEAR. I took walks every day with my cane to pick up my travel skills, I worked on my Braille, I called up Nik and he set me up with voice over software and gave me pointers about childcare while blind. I even went to the Commission for the blind and took computer classes. My skills were a little rusty, but I had them and I had confidence in them. I KNEW I could do it. I can’t imagine what might have been had I been horrified by the loss of my vision right before they were born. I don’t know if I would have been able to withstand the criticism and to show them that I had the skills to take care of my children.

When I see the revolving door of people who keep coming back to the commission to get more skills when their vision changes, and also the FEAR and the holding on of the little sight they have, I feel bad for them. It is also a waste of resources. I’m not saying that there shouldn’t be brush up workshops and things like that. That is fine, especially with the changing of technology. But intense rehab should be prevocational skills training that you basically get once and you fall back on again and again. You shouldn’t have to be a lifelong student of the OCB just because you never learn to do everything without vision. Just learn it once and get on with your life.

The other factor is that most of the time, the “use your sight above all else” is really inefficient and unreliable, and will put the low visioned at a distinct disadvantage. I can’t tell you how many people I have seen that are taught (because using your vision is ALWAYS better than god forbid being blind) will painstakingly struggle with reading one six-inch tall letter at a time when reading on a CCTV, when they could just read braille or use voice over and be as fast as everyone else. Or they will squint and squirm through using a monocular instead of a white cane and STILL trip on a random stair. But god forbid they can’t use the skills of blindness because blindness is BAD and they aren’t blind!!!

Dumbasses.

Ok, but to be fair, it is these sighted low vision specialists fault. They just have to keep holding on to their precious low vision gadgets at all costs, because blindness=bad. They are relentless. And when you are a new low vision person, you don’t know any better, and these gadgets seem to work better than not having them. They don’t know there is a better way. It is really ingrained.

Once I was student teaching in a special ed classroom. There was a low vision kid at the school who was not my student. I only knew of him. One day, I was waiting at the bus stop with my guide dog when this student and his mother showed up and started talking to me about his blindness and his IEP meeting that was the next day. She asked me about my experiences growing up as a low vision person. I knew this was a controversial issue, so I stated that I was NOT talking on behalf of the school or as a teacher, just as a person on the bus stop that was sharing my experiences. She said she understood. I told her that if I could have done things differently, I would have learned Braille, and shared how painful and worthless all the low vision stuff was for me. And how it always put me at a disadvantage because I was never as good as my peers when using my vision, although maybe I could have been with Braille. She thanked me and that was that.

Well, the next day, I guess shit hit the fan at his IEP meeting. The mom asked for Braille, and the teacher of the vision impaired had a hissy fit about it. So then I GOT in trouble. So, first, I was pulled into a meeting with the principal of the school, my supervising teacher, and the vision teacher and scolded. Then, they insisted that I meet with them and this mother and basically tell her than since I am not a vision teacher, I don’t know what I’m talking about and I am wrong. I asked the vision teacher why she was so against him learning Braille, what could it hurt? (I suspect it was at least partly because then she would have to hone her Braille skills–vision teachers never have good blindness skills–and go through all the energy of procuring Braille materials). But she basically said just because I have chosen to get all into “seeking out attention for being blind” that we didn’t need to teach this child that it was “ok to be blind and give in to learning Braille.” To her, it was a fight against blindness. If she could make him look sighted, that was much better than whether he learned to read proficiently. Sighted was better than blind at all costs. Although I admitted that, yes, I am not in fact a certified teacher of the visually impaired, I still stood by my opinion that in MY VERY OWN FREAKING LIFE, low vision techniques had been a detriment to my success and I had a harder go of it because I did not get a chance to learn Braille growing up. After  that, I was barred from all interaction with this child and family, and so I don’t know what happened. But I spoke the truth and hope to have planted a seed there.

Nik often comments how as a totally blind person, he has it easy compared to me. He is just blind, people understand that. They have their attitudes about it sometimes, but the premise is simple: he can’t see, they think he can’t do anything, he proves them wrong, and they either accept it and go on or never accept it and put him on a pedestal or continue to treat him like he can’t do anything. He compares the partially sighted to those who are of mixed race. There is heavy pressure on you to be -to PASS as sighted. But you can’t. You are blind. Yet they don’t always accept you as blind, either. If you use a cane you are faking or trying to draw attention to yourself. If you don’t use a cane and you bump around and trip and fall, not only do you create a huge amount of anxiety for yourself, but people misunderstand you as being stupid or drunk or just weird. For me to accept that I was blind meant accepting that I could NEVER pass as sighted for very long. And my job is to get things done and keep myself safe. The most effective way for me to do that is to use the techniques of blindness (with some low vision stuff thrown in) and identify as blind. It is not my job to get everyone else in the world to understand my vision and why I choose to use the methods I use. It is not my job to make you comfortable about your inability to fit me into the sighted box or blind box. (Or in my case, deaf blind box which always takes everyone to Helen Keller territory.) Because these are false labels anyway. It is people who need to change the way they think about what it means to be blind, not me to mold my methods of reading, traveling and living into what society thinks looks “more acceptable” or not. If I want to ask for a Braille menu, I have that right. If I want to ask the wait staff for help, I can. If I want to squint funny and look sideways at a menu and read it myself, it probably is not the most efficient, but sometimes there are reasons. (i.e. There is no braille menu, there is a long line and no wait staff, and I’m hungry and don’t want to get in a political argument right now, damn it!) It is my business. But I should have the opportunity to learn all of the available methods to read the menu and find out what works for me.

There is nothing inherently wrong with using low vision aids, and a low vision specialist who acts like what they are, which are vendors of products they let you try out to see if it would be of any help to you can be useful. But there are no “skills” past learning how to operate a CCTV or zoom text (which face it, takes minutes to learn) for low vision people. Low vision specialists like to thing they are teaching all of these low vision skills that save a person from the horrible fate of blindness but they are not. They are hindering you. The skill of low vision is knowing WHEN to use your vision and when to use your blindness skills. When is zoom text helpful (maybe to see a hard to describe graph or flowchart) and when it is a detriment (when using it takes you three hours to read three paragraphs of text.) When is a monocular helpful? Maybe you use your white cane and you have your monocular thrown in your bag. Then, you get a bit confused over an exact address of a new place. There is no one around to ask, so you pull out your monocular and see if you can read the number on the building, then you throw it back in your bag and go about your business. NOT constantly holding it up to your eye and standing out in the street in front of the bus to see the bus number when it blocks your peripheral so bad you trip up the bus stairs.  It is going to be different for everyone, of course. But the litmus test should be “What is the most convenient and efficient way to get things done?” Not, “What will make me look the least amount of blind?” (Like there is anything normal about holding a monocular to your face while walking down the street or pressing your face up to a computer screen.) And not, “What will allow me to use what little vision I have so I don’t have to-gasp of horror!-admit that I am a blind person?”

In a rehab setting, I think the way to do this is sleep shade training. Blast through the fear of blindness, get all of your skills, and then on the last week or so, sure, go to a low vision vendor and pick up a few helpful gadgets. Go around and test which works best, the blind method or the low vision method. You will end up going back and forth and having a whole bag of tools to choose from to get things done. People have found that they end up doing a much better job with some things when not using their vision (even travel) then when using it. And other times, they drop something on the floor, sweep their hands in a systematic manner the blind way, and their eye will end up catching it first. Fine. These methods don’t have to have a hierarchy to them of which is better or worse. But don’t deny yourself good sound ways of doing things just because they will make you look blind or are loaded with prejudicial baggage. Don’t give a shit what anyone else thinks, own your blindness, be who you are and get on with the business of living.

Because in the Land of the Blind, the one-eyed man is just some dude who is only cool if he can be a respectable, functioning member of society.