by Sarah J. Blake
Note: The text from this page is adapted from a letter written to Ken Tittle.
When most people try to imagine being blind, their only point of reference is what they see with their eyes closed: nothing. The only understanding of blindness that most sighted people have, therefore, is that blindness means the absence of sight.
Most blind people have at least a small amount of vision. In fact, many people who are classified as legally blind have enough vision to read some print and to navigate with some ease in the environment. In many ways blindness is like an older person's hearing impairment. The blind person may be able to see things and sometimes see them well, but other things may not be seen clearly or at all. The condition which caused the blindness may be progressive and cause the person to lose more and more vision.
Most people experience grief as they lose their vision. However, I think the grief is very different when blindness is all you've known--or when you assumed that you were blind and then experience vision loss and don't understand why it hurts. The "blindness community's" response to vision loss typically is to blindfold a person who is partially sighted, force the acceptance of blindness by disallowing the use of any residual vision. This bothers me greatly, and I now understand why. It's the same thing as minimizing or denying the disability. It's minimizing the residual ability, which is no better. It's completely discounting something that is just as much a part of what the person can do as the limitations are. The person then magnifies limitations and feels those judgmental things when she acknowledges her abilities. She has learned that she is "blind" and acknowledging abilities equals failure to "accept" blindness.
Parents grieve in response to their child's diagnosis, and I'm certain that how the parents grieve affects the way the child with blindness "adjusts" or develops. Parents who get stuck in denial and mourning will pass this denial and mourning on to the child. Parents who bury their grief and become stoic will probably provide the same rich experiences for the child that parents who work through their grief provide, but there will be lingering undertones of unprocessed grief in the way the child is raised. These undertones can be more disabling, functionally, than blindness is.
The parent who lingers in denial will tend to refuse assistance, training, or techniques and tools that could compensate for blindness-related limitations. The child in this situation will often pretend to see things she can't, will also be resistant to nonvisual techniques and tools, or (if she can't avoid them) will become a perfectionist about appearing "normal." When this child is older, she will benefit greatly from things like defining limitations. It may be uncomfortable to do this, but it's also freeing. Lynna has talked about the mobility impairment equivalent to this process.
The parent who is in mourning may be quite overprotective or overindulgent. The tragedy of this is that it robs the child of opportunities to develop vital knowledge of her own abilities, the world around her, and skills needed for independence. Many children in these families become extremely passive but also develop a very intense but internalized anger. (Anger is not allowed because it would interrupt the behaviors of the parents who are stuck in mourning.)
The parent who is stoic will encourage some level of independence and will welcome whatever techniques and tools make this happen. However, stoicism is really just buried mourning, and behind the encouragement is the undertone of fear and doubt. Can a blind person really be independent? I don't know, I'm afraid not. So I'll prepare her to be independent but prepare myself for the fact that she may (sometimes will) need lifelong care. How can a parent struggling with this internal conflict truly raise a child to be a confident, independent adult?
One of the first things parents do as part of the grieving process is ask, "What can my child see?" The most frustrating answer is the truthful one: "I don't know, and we won't know until she can tell us (or until we can make some assumptions based on her behavior)." I hate reading emails from parents whose doctors have told them that their child will have 20/400 acuity and will not need braille. How can you predict a child's acuity based solely on the appearance of the retina, particularly when that child is a 23-week preemie who may also have some form of brain damage? And how can you predict how well that child will use that vision? You can't, and telling a parent that the child will not need to read braille is just fueling the denial. Braille isn't just about visual functioning any more than a wheelchair is about being completely unable to walk. The fact that a person can use braces and crutches doesn't mean that this is always the most efficient means of travel. The fact that someone is sitting in a wheelchair doesn't mean she is completely unable to walk. The fact that a child can read very large print for a moment on the eye chart doesn't mean that visual reading is best or always most practical. The fact that a child is reading braille doesn't mean she has no usable vision. Part of the work I do with parents is to help them understand that nonvisual techniques are about comfort and efficiency.There's not a cut off point where a child switches from print to braille. That has to be an individual decision based on the child's limitations and abilities, and sometimes the decision involves more than just a measure of visual abilities. Without acknowledging both the limitations AND the abilities, the decision is inaccurate; and the greatest problem is that you really can't measure visual abilities effectively--and you certainly can't measure visual fatigue effectively.
I grew up in a rather interesting situation. My parents were told that I would be totally blind. They didn't expect that I would ever see anything. When they discovered that I could, they had to rely completely on me to indicate through my behavior and, later, my language, what I could see and what I couldn't. Doctors never gave any indication that I could see anything but light after that, so there were no expectations that I would see specific kinds of things unless I had demonstrated that I could see them in the past. I think that this probably made it easier for them and me to accept the need for adaptive techniques and tools. But I also know what it feels like to realize as an adult that my abilities had not been fully acknowledged. When I went to train with my second dog guide, I had lost most of my vision and then regained it after surgery. I was still working to adjust and had already begun to lose it again as the transplant was failing. I met with Lukas, who taught me when I got my first dog, and we discussed my difficulties with adjustment. I told him that I never realized what I had until I lost it. He said, "You had a lot." That was really the first time anyone had acknowledged my abilities, and that was important to me. In a way, it enabled my grief. I had failed to allow myself to grieve because I assumed that since I already used nonvisual techniques I should not care that I was losing my vision.
There are some terms commonly used in visual evaluation now that my parents never knew. Perhaps knowing the terms would have made it easier to classify the changes in my vision; but I suspect that my parents still don't understand the importance of that kind of classification. Especially to my mom, blind is blind, particularly when trying to give a friend or acquaintance a one-sentence explanation of what I am able to see and not see. It was easy to say, "She can see light and shadows," even though that wasn't entirely accurate. It gave the other person something to work with and ensured that he/she didn't assume I could see things; but it didn't help *me* to understand my own abilities or prepare me to deal with the loss of those abilities.
I want to try to define these terms and explain a bit about blindness and visual impairment in general, but I also want to emphasize that within these levels of functioning there is a lot of variability for a number of reasons.
Light perception refers to the ability to discern between light and dark. This term has often been used incorrectly in the absence of more descriptive terms. Having experienced true "light perception," I will say that this is the point where I would say with complete certainty that I am completely functionally blind. Other people would define the point of complete functional blindness differently. As my explanation goes on, I think you will see why I define it this way.
Light projection refers to the ability to not only discern light from dark but also to locate the source of the light. This ability makes some navigation possible in some settings. The person with light projection can locate windows and doors, lamps, etc. All of these things can serve as landmarks and make navigation without a cane in a familiar environment very comfortable. (A totally blind person will also navigate without a cane but does it completely using nonvisual methods. The use of nonvisual methods is very natural for a person who has light perception or is totally blind, and this is part of the reason it is hard to see blindness as disabling, especially for people who are blind from birth. More on this later.
Object perception refers to the ability to perceive the presence of an object. A person with object perception will be able to locate and avoid objects but not recognize them visually. This ability may be dependent on the object's location relative to the person's visual field, but I'll say more on that later because visual field really is another concept entirely.
Form perception refers to the ability to trace an object. This means that the person may be able to use certain cues to recognize objects visually: a cup is round and has at least a little bit of height as compared to around flat saucer. A person has a different shape from a lamp post, etc. But objects with similar size may be unrecognizable because the person cannot distinguish minute features. For instance, my mom was lying on her stomach on a bed once and her clothing blended in (in my perception, anyway) with the bed. So I saw her dark head and thought I was seeing my black cat curled up in a ball.
Now we get to real measures of visual acuity. Visual acuity tells you the distance from which a person can see an object of a certain size. It's really just a standard and tells nothing about the functional use of vision--and of course, I will have more to say about this further down in this missive. Visual acuity is generally measured using the Snellen eye chart. The chart is like a standard. A "normally sighted" person can read the smallest line from 20 feet away. A person who is legally blind cannot read anything smaller than the "20/200" line from 20 feet away--a normally sighted person could read that line from 200 feet away. (I've always been skeptical about the idea that anyone could read anything from 200 feet away, but at the conference I asked Lynna to tell me if she could read a person's name tag across the room. Having her tell me where someone was standing whose tag she could still read was fascinating.)
If a person cannot read the chart from 20 feet away, the doctor will move it closer until she can read it. In my case, I cannot read the print. So he measures whether I can count fingers and from what distance. If I cannot count fingers, he uses one of the other terms to record my visual acuity.
Visual acuity is useful for certain things. For instance, if a person is going to drive, she needs to be able to read signs from a distance. Driving requirements vary from state to state, and some people with lowered visual acuity (around 20/200 or so) are able to use specialized glasses to enhance visual acuity and are able to meet driving requirements.
However, there is a disparity between the cut off for driving and what is classified "legal blindness." People in this bracket are generally called "high partials." Their vision is extremely usable, and most do not read or need to read braille. They generally use a small amount of magnification for brief reading tasks and may use a closed-circuit TV for longer reading tasks. Some may hold print quite close to their faces but be comfortable reading in this way and be able to read at a normal speed. These are the people who are comfortable using the magnifier feature in Windows, which provides limited magnification.
The cut off for defining "legal blindness" based on visual acuity is 20/200 in the better eye while wearing corrective lenses. A person who has 20/200 without glasses but 20/40 or 20/20 or even 20/180 with glasses is not considered legally blind. But legal blindness is not a functional definition. It is an arbitrary criterion used for establishing eligibility for certain programs and services. Again, it tells almost nothing about how the person uses that vision.
Visual field is another criterion used to define legal blindness. A normal visual field is 180 degrees. Legal blindness based on visual field means the field is no bigger than 20 degrees--while wearing corrective lenses, of course. Some people have scattered fields; some have doughnut-shaped fields with a blind spot in the middle. Some have only a central field. Some have only a portion of the field on one side. Some have visual field defects in addition to lowered visual acuity.
Many other things also affect the ability to see as well as the ability to use visual information. Medications taken for other conditions can cause visual side effects. Damage to certain parts of the eye can cause light sensitivity, blurring and distortion of images, problems with color and contrast perception, difficulty in low lighting, etc. Problems in the brain can cause difficulty with processing visual images. A person with "object perception" may be limited to seeing objects of a certain size for a number of reasons. For this reason, the terms all have limitations and may not be accurate from one situation to the next. Two people with the same clinical measures of visual acuity may use their vision quite differently.
There are some assessment tools (generally used by teachers) that help to define more clearly how a visual impairment does and does not affect a person functionally, but there is no way to completely define this for every situation, especially when the person's vision fluctuates. Educationally, "functional blindness" refers to the reliance primarily on the sense of touch for writing and reading tasks. There is an entire book devoted to assessment of functional blindness according to this definition; but the assessment is not without flaws. The assessment is based on several factors as interpreted by the assessor. Assessors sometimes find what they look for, and an assessor who has a bias against the use of braille by a child with low vision can manipulate the results easily. Used correctly, the assessment is a good educational tool; but the term "functionally blind" implies to some people that the person cannot use vision for any purpose. I don't have a problem being categorized as blind in general. I do prefer that people recognize that I have some usable vision in certain circumstances, and in fact I like for them to know when it is and is not useful. Is this denial? I don't really know. I use my vision for some navigating, and I like for people to point out visual landmarks when possible. I like for people to understand that when I walk into a room, I might actually get my first understanding of the room by observing what I see, whereas a person with no usable vision may want to explore the room tactually.
One of the common attitudes among blind people is that blind is blind. It's not necessarily true, but this is one of the best avoidance mechanisms I know. Stop trying to explain what you can and can't see. Just acknowledge that you're blind. Just use nonvisual techniques--they're completely reliable and you can stop wallowing in your self-pity and be "normal." Some rehabilitation centers go so far as to require every client with residual vision to wear a blindfold, regardless of whether or not the person's condition is progressive. Use of visual techniques is taken as evidence of emotional maladjustment.
But this isn't necessarily so, and I don't think that blindfolding is an effective way of truly dealing with emotional reactions to blindness. It is useful sometimes when a person is learning a nonvisual technique and vision is a distraction, but how necessary it is and for how long is a very individual matter. I worked with my current dog for a week wearing a blindfold. I understood the point of this--my use of my vision was causing me to do subtle things that interfered with the bond of trust that was supposed to be developing. At the end of the week, I told the instructor that I was finding it emotionally difficult to continue with the blindfold. "So take it off, and we'll see how it goes," he said. Control of the situation is extremely important. It's natural and healthy to want to continue using what is available, and what I see happening in the rehab centers is generalization that having and using residual vision equals denial and assumption that the only way to stamp out the (supposed) denial is to force total blindness until the person learns to rely exclusively on nonvisual techniques.
Understanding a person's eye condition can help lead to better clarification of abilities and limitations, assuming the person has some residual vision. This is important for sorting out when the vision is and is not useful. I much prefer the Mariposa technique of defining specific abilities and limitations. I think that in doing this, it comes clear what is and isn't a practical use of vision. The process may take time, but it's much more authentic and "natural." It also places the responsibility for accepting or refusing limitations and adaptations squarely on the shoulders of the individual. Of course, this process wouldn't work in a rehabilitation center, where success is measured in terms of the number of people who are "successfully rehabilitated." So they turn out factory-style adjustment to blindness.
If there is no residual vision, the question then becomes whether total blindness occurred very early in life or at some point later. Generally, doctors use the term "congenital blindness" to refer to onset before age 5. The assumption is that the young child will have little or no memory of having had sight until age 5. How true this is probably depends on the child. I personally believe that loss of sight can profoundly affect a young child's life and that the child may even have some memory of it at some point, even if that memory is not something she can access consciously. Parents have told me about their three-year-olds who stop walking around the house independently and become clingy and fearful after losing their vision, even if it wasn't normal vision to begin with. I have memories of the way things appeared from as early as age three.
If total blindness occurred early, there are more questions to ask: questions that help define the impact of the early vision loss on the child's development. What was the cause of blindness. Did the child receive invasive medical treatment which may mean that movement was at least somewhat restricted? Movement is the only way that a blind child can learn about herself and the environment. If movement was restricted due to hospitalization, post-surgery requirements, or parental overprotection, then blindness will impact the development of basic concepts needed for independent travel, self-confidence, and even academic subjects like math and geography. These things can also be affected by brain damage, and for this reason it is also important to know about any brain injury the person may have sustained or neurological damage that can accompany the eye condition or may coexist, as in the case of premature birth. Preemies may or may not have damage to the area of the brain that handles spatial relationships and abstract thinking. I do not, but this part of my brain is often affected during my migraines and spatial orientation problems are quite disabling whether or not the person is blind. Blindness and orientation difficulties combined are extremely limiting.
If the child grows up with a visual impairment, the state of being visually impaired is "normal" to her regardless of what that state is. Defining limitations is difficult for people with congenital visual impairments because they have no frame of reference. Unlike the person with a mobility impairment who can see other people walking or doing other things and realize that she can't do them, I can't see other people seeing and realize that I can't. If I've failed to see a sign or some other aspect of the environment, I don't even realize it so can't (and don't) grieve it. I know what I can't see or do using visual techniques now compared to what I could see and do five years ago, but it's very hard for me to know this compared to what you do. My awareness of my limitations is changing and probably will continue to change throughout my life as I learn what other people can see.
Most congenital visual impairments are discovered in infancy. Unlike the parent who may become worried because their child hasn't started walking by age two, the parent of a child with a significant visual impairment will notice signs that something is "wrong" very early in the child's life. The eyes may appear small or damaged (such as in the case of a cataract). The infant may not respond to visual stimulation such as the parent's facial expressions. The eyes may move abnormally. This early diagnosis allows for an almost seamless introduction of alternative techniques for today's children--at least in the United States. Blindness is the child's (and often the family's) reality; and the introduction of nonvisual techniques often helps parents get through the grieving process by realizing that blindness does not equal helplessness.
If I've done something using nonvisual techniques all my life, I don't consider this a disability. I just consider it a difference, and sometimes I don't even think about it. You read, and I read. I don't think about the fact that you are reading print and I am reading braille until we are at a restaurant and there is no braille menu. When I find out that I'm missing a piece of information, I (personally) don't generally treat it as a loss unless a person ridicules me for it. I treat it as a fact and, depending on the situation, just an awareness that I need more information. Upon finding that there is no braille menu, I simply ask you to read. Now if you decided to refuse, I would either ask someone else or become frustrated/upset--and everyone's frustration tolerance level for things like this is different. Mine is fairly high. I adapt because I want what I want and I know that there is a way to get it. I'm generally very comfortable with nonvisual techniques and with admitting my limitations. Maybe this is product of the attitude my parents had about my blindness in general. If they found out that I couldn't see something, they moved on and found another way to show it to me. To me it was all very natural. I never needed to grieve certain types of things because I learned from the start that my limitations were not "bad" and didn't make me inferior. This is part of why encountering messages that indicate otherwise was/is traumatic for me. Thinking of myself as inferior is a complete departure from what I learned at home during my first five years of life. So my grief only manifests in situations where my inability to do something costs me dignity or means using an adaptation that I find personally distasteful, such as having a personal letter read to me. I used to feel this way about bills. I don't now because I scan them or pay them online.
Other people grieve every loss intensely. I have observed this a lot, and I think that maybe this has to do with the family's general response to blindness (never completing denial or mourning). If the family can't or won't move easily from acknowledging a limitation to finding an alternative, then the person will not seek the alternative even when it exists, or the person will despise the alternative.
The real problem with not having a frame of reference is that (a) sighted people don't realize all of the things they use their vision for; (b) many people don't perceive that grieving is necessary when an effective alternative exists, especially when it has been in use from a very early age; and (c) because the frame of reference regarding the "functional" impact of blindness is always changing, it's impossible to grieve the losses all at once. I grieve when I encounter a new problem that is significant, but the fact that a problem or challenge is new doesn't make it automatically significant. If I grieved the entire impact of blindness on my life, I would probably never stop grieving because I am always discovering ways that blindness affects me--as you said, it's much more complicated than a muscle assessment. I know people who do this, and I don't think I could tolerate it emotionally--and I don't need to. I've learned (as a general rule) to "think outside the box." What I grieve are the instances when thinking outside the box doesn't work, especially when the reason it doesn't work is someone else's rigid thinking. This is where the balance is between being "too positive" and overemphasizing physical limitations. Because adaptive techniques are so readily available, the impact of blindness for a person who has grown up with it is rarely about physical limitations. It is about subtle things that are really indirectly related to the physical limitations of blindness. How much connection people make between the problem and the blindness varies, and this is as it should be because in many situations the problem began because of blindness but grows into something else entirely.
My social situation is a good example of this. When I was seven, the problem was that I could not go across the street and join in the play. This wasn't directly blindness-related. I could physically have done it and even had the skills to do it safely. But my parents were not comfortable with nonvisual methods of street crossing, so they restricted me to playing in my own yard or roller-skating within three houses' distance on the same side of the street. But if I was not blind, this restriction would not have existed. I knew this, and I drew the conclusion that my lack of friends was a blindness problem. I assumed that if I was not blind, the other children would want to play with me. It was a slightly flawed assumption but pretty deep thinking for a seven-year-old. But by the time I was 12, I no longer saw the social problem as blindness-related. I could get around the school. I participated in the same activities. The problem was not my inability to physically join the other students. So in my mind it was not a blindness problem. No one else connected it to blindness either, even though there were obviously aspects of the social scene that I missed on a regular basis. Part of the problem was the many other blind students I knew in various schools did not experience social problems. So it could not be a blindness problem. Not unless you go back to that seven-year-old and analyze the cumulative effect of a number of seemingly unrelated blindness impacts. But that's very complex, and it's not something that can be solved by defining every physical impact of blindness because each potential impact has a different effect on each individual and the cumulative impact is not the same.
I know that my response probably looks a bit like denial. I'm hesitant to call it that, and I think this is where many people struggle. Denial, to me, is refusing to acknowledge a limitation. I don't refuse to acknowledge that I can't see that sign, and I don't pretend to see that sign. But not seeing that sign is generally not a handicap for me unless I realize that reading the sign is essential for me and there is absolutely no way I can get the information. Even in the case of the handwritten letter, I grieve the loss of privacy and dignity and not the loss of sight or the inability to read. It would be more convenient if I could read, and I might even say that. But I would be just as comfortable if I could find a person whom I could trust and with whom I felt comfortable exposing my private mail. I have had such people in my life before, so this is not something I see as an impossibility. So my reaction is not the same kind of reaction as my grief in 1998 when I was acknowledging the loss of the vision I had. In a way, I almost feel like I've experienced the problems from both sides, although I am also quite aware that grief is much more intense for someone who not only loses something she enjoyed greatly but also has to completely learn new ways of doing ordinary tasks. I understand why it's overwhelming, and I can say that it is nothing like what a person who is blind from birth confronts. The grief processes are completely different, and the severity of grief that a person who is blind from birth experiences is directly related to the way that blindness was handled during childhood.
I don't have a driving need to find a "cure" that some people have. There was a time when I prayed very earnestly for healing, but this was more about my spiritual inferiority complex than it was about my real desire to see. If a cure was available and was safe, I would probably take advantage of it, and I do keep up with what's happening in the realm of research, particularly since 1998; but I'm comfortable in many ways with my limitations unless and until they become indicators that I am inferior.
What "makes blindness suck?" It's not just the limitations. In fact, often it isn't the limitations at all. There's a saying that goes around in the "blindness community" about the real barriers being attitudinal. When I go to that restaurant with you and there's no braille menu and you start reading to me, I don't have a "problem" with blindness. If I go to that restaurant with you and there is no braille menu and you read in silence and I am clueless about what's available, then I have a "problem" with blindness, although I'm more likely to think that the problem is you are selfish and insensitive for not reading me the menu. If I fear that you will react to my limitations or differences in a negative way, then I have a problem with blindness. I could go eat Japanese food with Lynna because I know she wouldn't care if I used chopsticks correctly or not. I couldn't go eat Japanese food with some people I know because they would have to correct me in a way that communicates that I am inferior because I don't know how to use chopsticks and can't just pick it up from watching people.
This is especially true in social situations. It isn't about my inability to locate a conversation partner visually or find out what's on the snack table. I do these things nonvisually every time I am at an ACB convention. I walk around strange hotels without caring what anyone thinks. I go to huge mixers and listen to conversation bits until something catches my attention, and then I join in and introduce myself if I don't know the people. I think nothing of any of this unless I'm just not in the mood for a crowd. If I bump someone, I say I'm sorry. If my dog sticks her nose where it doesn't belong, I apologize and give her a correction. If I get lost, I ask for help. None of it matters. But in a setting where the rest of the participants are sighted, I freeze up most of the time. I just can't get past the offers of help and even insistence that "I'll do it for you," or "Where are you trying to go?" Um, I'm getting the lay of the room. No, don't steer me around and assume you're orienting me--and that's often what happens. I'm so used to asking for what I need or finding ways to get it myself that I feel very awkward when I'm in a situation where I'm not encouraged and (often) am subtly discouraged from doing this.
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