Since early 2002, I have been communicating with Dr. Ken Tittle, who founded Mariposa, a Christian ministry to train people with disabilities to work as peer counselors and to facilitate full inclusion in the church community. Mariposa's work was solely with people with mobility impairments until 2002, at which time Dr. Tittle contacted me and asked if I would be willing to participate and provide some information about blindness and my experiences as a person who is blind. In January, 2004, Ken and I took a deeper look at blindness privately. I want to share some snippets from our exchange as well as make some additional clarifying comments. Most of this is nothing I haven't thought or explored before, but my point here is to get my thoughts into a single project that can stand alone. I'm still working on letting go of my feelings about the redundancy of this in comparison to my other writing projects.
I am coming to suspect that blindness is in many ways a severe disability with far-ranging impacts. (Duh! But... ) Like you say, positive is in, and I read plenty from blind people saying, in essence, no big deal... But it seems to me that nowhere have I seen a comprehensive analysis, honest, of all the impacts of blindness in personal activities and social interactions, including an analysis that factors in all the ways that most people use their visual abilities-- something that many blind people have no way to know and many sighted people are not aware of.
On top of that is the fact that blind people have high cognitive abilities, with alternate methods to do so many instrumental things, can be so significantly independent in most activities of daily living, particularly within environments that they know and can control and order, and that they look pretty "normal" for the most part (some very much so), and have no trouble walking, talking, hearing, would seem to have no sexual limitations, can master readily (other things being equal) not only high level professional careers but many physical activities with or without adaptations, etc. etc. it seems to me that what may make blindness even more devastating is that most people have no concept at all of the burdens it imposes and you can't discuss and explain without seeming to be complaining or having a pity party or trying to put a guilt trip on people.
I think that blindness must probably be an intrusive disability in myriad ways and to crippling degrees that are rarely ever acknowledged, and therefore rarely ever can be cried over, and that most sighted people are probably essentially clueless, even though they probably think they understand when they look at a blind person.
We have seen with paraplegia that family and friends may assume that you can't do much of anything of significance, and paradoxically, then totally fail to appreciate the true physical limitations, forcing people to deal with obstacles and lack of consideration that are totally unnecessary. The same must be true and more so for persons who are blind. And it is hard for many to get to the point where they can say freely, "Sometimes being blind sucks," even though clearly that has to be true. I guess I am coming more and more to suspect that blindness is much more of a "big deal" than most sighted people dream, even while they are usually sadly mistaken in how little they think a blind person can do. Does that make any sense? How useful would a clear-eyed (so to speak), unflinching exploration of the scope of the impact of blindness be? When we look at this with persons with mobility impairments, they are immensely prone to deny and minimize, and the process of confronting directly the actual implications of their limitations is often a revelation to them, as well as to others around, but ultimately it has been positive. I don't know if there are parallels with blindness, but my instincts tell me yes. ...
When MOL participants introduce themselves, The second part was to outline the parameters of ones physical limitations in a value free way, without trying to minimize, without saying "but..." etc. It is very hard to do, emotionally, for most people with disabilities. Generally, and naturally, people keep tangling up the limitations with judgmental things and defense mechanisms and things they would rather not face and conventional training about what you are supposed to say and fear of not wanting to seem too disabled ("people might pity me") and so many other things. In some sense, it is an attempt to separate out what the physical parameters are from how "hard" it is or isn't, or from one's response to the limitations. Obviously how hard it is depends on so many variables and the person's situation, and obviously, too, how one reacts to hard it is will vary from person to person, but the "it," the severe visual impairment and its functional implications must be worth defining, and, I would say, worth grieving, also.
It is kind of like saying, let's define - functionally - why it is that blindness sucks so badly, and grieve what one does not have, and then... THEN let's get on to what can you do about it with what you have: how you have responded, how others have responded, what options one has to deal with the challenges and the obstacles, etc.
I wrote a response to this and explained a lot about terms used to describe varying degrees of vision loss. I also talked a bit about the concept of grief:
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.
... 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 (a friend also known to Ken) 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.
I want to expand a bit on this--sometimes time makes me express the same thoughts differently. I hope it doesn't seem that I am just repeating myself!
Lack of grief about vision loss isn't necessarily about pretending or avoiding perceived pity, although pity is a real issue that I face regularly. People sometimes assume that blindness is completely disabling based on their own imaginations, and because of this they assume that I have difficulty in areas where I have never experienced difficulty. Because I have lived with visual impairment all my life, some of the initial reaction, "I can't do this," is something I won't experience. From the time I was a very young child, my parents plugged in alternative techniques so that I would have the tools and skills I needed for everyday life. I learned the techniques before I learned the word blind. Well, most anyway. I learned to use my ears well and to ask questions when I couldn't make sense of a sound. So as I'm sitting in a pew waiting for church to start, the fact that I can't see what someone is doing ten rows back is of no consequence to me. The general din of people talking and finding their seats is just that. So when a sighted person walked up, literally patted me on the shoulder, and said, "You must be confused by all this noise," I wanted to gag. I'm certain that this wasn't meant as pity, but that's still what it is.
Don't make me grieve something that doesn't matter to me. I'm busy grieving other things you don't think about because you're stuck thinking about this completely from the sensory perspective. I'm busy dealing with the chain effect of blindness on my life. My thought process is fairly quick, and that's something I haven't thought much about until recently. It generally goes something like this:
- I just ran out of Kleenex, and my nose won't stop running.
- I need to get to the store to buy another box--and I needed it really soon.
- Can someone drive me?
- <I call around to see if anyone's going to the store.>
- No one's available. How am I going to get to the store?
- I could take a cab.
- That would cost $5 each way.
- I don't have $5, let alone $10, because I live on $560 a month and all the money is gone.
It doesn't occur to me to grieve anything at first because I generally accept the fact that I can't drive. The fact itself doesn't bother me unless it has implications for my life. Because I have a network of friends who often "help out," and because paratransit and other transportation options are available to me for most things, my first reaction to wanting or needing to get somewhere is not grief about my inability to drive. My first reaction is to figure out how I'm going to do what I want to do. The chain of thoughts above is actually more likely to trigger grief about employment issues for me than it is to trigger grief about blindness itself. If I was employed, I would have the money I need to use the cab, which is for me a perfectly acceptable way of getting to the store. Thinking about unemployment for a while may eventually lead to thoughts and feelings about the discrimination I've experienced, and this may sometimes lead to grief about blindness. But more often than not, it leads to grief about my poor choices during my college years. I rarely think something like, "If I wasn't blind ..."
I think that things are very different for people who either have recently lost their vision or who grew up in an environment where they were told openly, "You can't do this because you're blind," or something similar. I never was, so it's not natural for me to come to this conclusion and I'm not likely to want to spend my energy on it unless I'm in a situation where none of my alternative techniques work or where I'm being flooded with negative messages about blindness from sighted people who aren't up to thinking outside the box. This was the state I was in in 1998, and I was also dealing with a lot of spiritual angst based on something that happened in 1991. Blindness angered me a lot more then than it does now, but I'm not sure this was always the case. Something has to trigger that anger and grief. For a person who has not had blindness-related negative experiences, it is ludicrous to think of grieving the loss of sight. It isn't *POSSIBLE* for this person to grieve it. Blindness doesn't "suck" because of its functional limitations for the person who has grown up with nonvisual techniques. It "sucks" because of its impact on relationships, opportunities, etc. And if a person happens to have been fortunate in these areas, blindness doesn't yet "suck."