I’m sure I could have handled it better, but then again, she could have cut me some slack.
Twelve hours previous to being scolded by this woman as I was rolled into the OR for emergency gall bladder surgery, I had been writhing in pain on an ambulance. Then I had been in the ER for another ten hours, and only just recently had gotten a dose of fentanyl which finally gave me some relief from ongoing gall bladder attacks, but also made me a little out of it.
So when the OR intake nurse asked me whether I was really blind or just legally blind, I think I mumbled something about how those were not two different things. It was not how I usually would have handled it. I’m actually DeafBlind, and they had taken my hearing aids, rendering me to my full severe-profound state of hearing loss. I could not concentrate on what she was saying very well. But my answer seemed to provoke her rage. She got really close to my ear. She yelled at me with far more anger than was professional. “YOU! CAN! SEE! I can tell! I can’t lie on your chart! Its unethical! And dangerous! I’m crossing out where it says you are blind. I KNOW you can SEE!”
Ok, whatever lady, I maybe said aloud, or just thought in my head. I’m not sure which. I had forgotten about the part where, because I actually AM DeafBlind and my eyes don’t dilate, it can be hard to rouse me or tell if I am conscious after general anesthesia. This can create havoc in recovery, if medical staff are not clued in to my DeafBlindness. It causes them confusion and delay at best or to administer unnecessary intervention to try to revive me at worst. But hours later, in recovery, the first thing I remember was big fingers pulling my eyelid apart and then seeing a painfully bright light. Later I learned that an opthalmalogist had been brought in because my eyes were not behaving predictably. He confirmed that my eyes would not dilate, that I most likely did have a “severe visual impairment,” and this wording, which everyone was comfortable with after his confirmation, was deemed acceptable for my chart.
Imagine just living your life, trying to be the best person you can be, and being constantly percieved as a liar and a fake. No matter what wording you choose to describe yourself, someone will not be satisfied. Your integrity will always be questioned. Say I’m blind and people think I’m lying because I, like 90% of all blind people, have some usuable vision. Say I’m sighted, partially sighted, visually impaired or say nothing at all? Well, then I’m trying to pull something over on someone. I’m trying to be something I’m not. I am not the only one with this problem. Several months ago, popular Star Trek actor George Takei posted a photo on social media of a woman who was reaching for a liquor bottle on a tall shelf at a store. She had stood up from her wheelchair to reach it. The caption read, “Its a miracle!” The notion that all people in wheelchairs can not move at all and are “confined” to their chairs is a prevalent one. There was a social media outcry from thousands of others, like me, who had lived life with the “faker” label. Takei, who is openly gay and might be familiar with the concept of a continuum of gender identity and sexual orientation, eventually apologized. People like clean, clearcut boxes. and disability does not have sharp, easily defined edges. Like most things, its ever-changing, dynamic and its a continuum.
I get it. I would have never said I was blind before I was about 17 years old. Blind meant not seeing at all. I wasn’t like them! I could see! A lot actually! I mean, I’d had several eye surgeries, had an IEP and a teacher of the visually impaired that came and pulled me out of classes, and had earned the name “6 eyes” by the school bullies because of my very thick and odd looking glasses, but that was NOT the same as being blind. I wasn’t like them, those people who gropped around and used a stick and couldn’t do anything! But then, as part of my IEP transition plan, I was ushered off to the Nebraska Commission for the Blind for a months-long residential training session in Braille, cane travel, and other blindness skills. Most of the students there, like me, had some vision, and so we were required to wear blindfolds to render us totally blind and be immersed in the skills of blindness. On the first day, my orientation and mobility (cane travel) instructor inquired, “So how long have you been blind, Lisa?”
It was a startling question. No one had ever called me blind before. But he actually WAS blind so I just figured he didn’t know any better. He couldn’t see me. “Oh, I’m not blind.” I corrected him, “I can see.”
“Yeah,” he chuckled, “no one is blind when they come here.” It reminded me of when people say no one is guilty in prison. Like I was deluding myself. He explained that he actually had some vision and that most blind people do. But that it was much better, for a number of reasons, to just say “blind.” It would take me weeks, maybe even months and years to fully understand why. But eventually I came around to say with pride “I am blind!” (Or now I say, I am Deafblind. Since I was blind first, and for brevity, I will focus on blindness.)
A Hierarchy of Vision
The center I went to was unofficially but strongly affiliated with the philosophy of the National Federation of the Blind, the largest self advocacy group of blind people in the nation. I was required to read articles and listen to speeches from leaders in the NFB. It was there that I learned the concept of a “hierarchy of vision” and the harm that this concept has caused to our freedoms and opportunities. Although its much less common now, many blind people were essentially raised in residential schools for the blind. These schools often used a sort of hierarchy, or class structure, based on the amount of vision the students had. Students with more usable vision tended to get more privileges, more leadership roles, and more opportunities. The students were essentially sorted, by vision, into castes. Totally blind was the lowest, and the mostly fully sighted staff being the highest. This caused much resentment, fear, and lost opportunity for those with less vision. The NFB rejected this notion of a vision heirarchy. They promoted the concept that if you live in this realm of low-to-no visi0n in any capacity, you are blind. No one is worth more or less than any other. No one’s vision alone renders them more or less capable once we all have the skills of blindness. If you use vision on top of the skills of blindness, that’s fine, but blind is blind is blind, and it is respectable to be blind.
Eventually, kids with vision loss were mostly mainstreamed and would have an IEP and an itinerant Teacher of the Visually Impaired (TVI) that would come to their school and work with them. This was my experience. The kids who were first mainstreamed were the “less visually impaired” kids and many times totally blind kids were still stuck in the schools for the blind. Here is where an interesting thing happened. The TVI philosophy had long been to “maximize vision.” This meant that using vision with the aid of large print, or various mechanizisms for magnification was superior to the blindness skills of braille or audio methods of reading. Changing the environment with little tricks like high contrast cutting boards for cooking or painting the walls and the floor in bright, contrasting colors was superior to teaching kids to cook nonvisually or use a long white cane and learn orientation and mobility skills. The idea was that these methods were easier to teach and that the kids would look more “sighted’ and integrate more easily.
What happened instead was that adults who had been raised with these methods started to see that they were at a disadvantage to those totally blind people who were raised with braille instruction and cane travel skills. They were actually functionally MORE impaired than the totally blind people at times. If you can only read with 20X magnification, you are going to read with incredible effort and incredibly slowly, as compared to the blind people reading braille at 200–300+ wpm. If you are afraid to go out at night because you are night blind, you are going to be more impaired than someone who can use their cane and go anywhere, anytime. If you struggle to find your way around your computer with only 1/9th of the monitor visable (through magnification) you are going to be more strained and tired, and less efficient than blind people who learned to use voice synthesized computer programs. The skills of blindness (basically, non visual methods of doing things) are almost always much more efficient than those that maximize vision, which cause strain, fatigue and can be unreliable. I think most people with some vision use maximizing strategies sometimes, but they gain the most function if they have a full bag of tricks. By not considering those with limited vision as blind, they weren’t considered for blindness skills training. It robbed them of the strategies that would make them almost fully funtional in a sighted world.
Can you see well enough to…?
With blindness skills training, and with all the improved technology we have available to us today, there are really hardly any fields of employment that blind people cannot do competently. Sure, a blind person still can’t be a microsurgeon or a pizza delivery driver, but technology is changing all the time, so I wouldn’t discount anything in the future. The biggest problem blind people face today is discrimination. WE know that we can do almost every job, but most employers don’t. It is still a common thing to get asked such job interview questions as “who will walk you to the bathroom?” or “We use computers here and you have to SEE to use a computer.” You might think it would be easier to get a job by saying that you have “low vision” or are “visually impaired” instead of freaking people out by saying you are blind. Its not. It actually leads down to a rabbit hole that causes more trouble than just saying you’re blind and convincing someone that with reasonable accommodations, blindness is not a factor in your competency for the job.
When you have some vision, the inevitable question you will get asked almost daily is “how much can you see?” I know that most people mean well and are really asking “how can I best assist you?” But every blind person I know hates that question. Its because the answer is complex and dynamic and it isn’t going to mean anything to you anyway.
So, how much can you see?
Are you ready for my answer? Ok, here we go!
It depends. It depends on lighting, my health, how tired I am, where I have recently been and what I have recently been doing. I can’t see much out of my left eye because I don’t use it. I do not have binocular vision which apparently means I don’t see depth, but I really don’t understand what “seeing depth” means so I can’t tell you how that affects anything. If I focus on my left eye, I can’t see out of the center of it. No, there is not a black spot (you don’t see black out of your elbow, do you?) its just that things don’t have a middle. I must also have poor peripheral vision because if I don’t use a guide dog or a cane, I’ll inevitably bump into stuff on my left. I can see some…light? maybe color? shapes? I don’t really know. I don’t pay attention. I can see better out of my right eye. Oh, but not at night. Yes, I can see streetlights, but they don’t illuminate anything? How can that be possible? I don’t know.How do lights at night help you? What does “illumination” look like? I don’t understand that concept. Further, I have been told I have poor peripheral vision, but I don’t know what you see peripherally but I guess you see more? So, Ok. And also? I have no lenses. Lenses allow you to focus on near or far things and I can’t do that. I guess I have one level of focus? No, I don’t know what it is like for you to focus near and far so I don’t really know how to describe it. Also, I have had so many surgeries that my eye muscles make it hard for me to move my eyes and they don’t move well together. I don’t know if that affects my vision at all or if it just bugs you because my eyes don’t look quite right. Also, I see floaty spots. They are just there. I don’t really think about them. But if I get a headache they can increase to the point where they block a lot out and also if I come inside from a really bright day I can’t see anything for, like an hour or so because my eyes dilate poorly. Understand now? No? Well how much can you see? No really, try to describe it to someone who has no concept.
It really does no good to tell people all of this so I rarely do. It doesn’t clear anything up for them. For employers, it becomes a test. I am trying to convince them that vision is not a factor in the job with my blindness skills and accommodations, but all they want to know is if I can see well enough to do the task they think can be done only with vision. I cannot promise that I can do a task only with vision or that I will use my vision at all when doing the task. One day I may, the next day I may not. One day I may need an accomodation such as documents in electronic format and voiceover, but yes, I might be able to read a few words without it at times. Then, the accusations come. You can’t see well enough to do this, you said you could! You can see! You don’t need that accommodation, you lied! You can only have this job if you can see that sign on the wall over there, can you? Well, I’ll try you out since you can see some, but I would never let a REAL blind person have this job!
So, saying I’m visually impaired, partially sighted, low vision, etc. does not help. It has worked much better to say, I’m blind. Yes, I can see a bit sometimes, but essentially I rely on my blindness skills and accommodations.
My husband is one of the 10% who is totally blind. He comments all the time that he and others who are totally blind have it easier than us with some vision. When he goes to the doctor and asks for help filling out a form, they help him. Most of the time they are even nice about it. When I walk in with my guide dog or white cane and ask for help, it ends up being a thing where I have to convince them that, yes, I really need the help. Even though my eyes look relatively normal and I can look directly at you, I really am blind and can’t fill out the form independently. This is almost always a ten minute back and forth where they seem to think I am trying to pull one over on them. It is not easy to live life with everyone finding you inexplicably untrustworthy and dishonest. What motivation would I have to fake it, I always wonder? Gee, I LIKE inconvenience and discrimination! I think I will fake blindness so I can have more!
In the end, my identity as a blind/deafblind person has been more rewarding than rejecting the label for some illusive wording that would never be accepted or understood by everyone all the time. Being blind has helped me get the opportunity to aqcuire the blindness skills I need to be functional, safe and successful. If I had not gone through the blindness immersion training when I was 17, I don’t really know how I would have made it through college. No amount of maximizing vision would have gotten me through. I would have missed so many opportunities to identify and join with thousands of other blind, Deafblind and disabled individuals. I would have walked around in shame of my limitations instead of pride in the assets that disability affords me. I would have felt like I always would have had to minimize my vision impairment and try to be as sighted as possible, something I would never be successful at. Like everyone, I am many things. I mother, a business partner, a teacher, a wife, a volunteer. And also, I’m Deafblind. Its respectable to be Deafblind.