by Sarah Blake
Following is the text of a letter written by Dr. Ken Tittle as an opening to a discussion about the impact of blindness.
I have not had much personal experience with persons who are blind, but because of the similarities and differences with other physical disabilities, it has always seemed an important area for me to understand. It just seemed that there is so much for me to learn from those who are blind that I wouldn't really know what I was talking about with disabilities until I understood more about blindness and people's responses to blindness -- their own or others.' Much of what I read and casually observed had confused me, and, in contrast, you have seemed to be a consistently honest and perceptive voice whose readings on the experiences, and whose willingness to explore the emotional and interpersonal implications of blindness seemed to ring true to the experiences of others with disabilities whom I know so much better. So I am going to be a little bold, here... take a risk because I trust you and your insights and openness.
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.
Am I way off base, or does this have some sense to it?
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.
It is obviously so much more complex to assess than a muscle status evaluation in polio or a functional evaluation in quadriplegia or cerebral palsy, and adding to the complexity are what must be fundamental differences between the person blind from an early age and largely lacking visual concepts or mental "maps" and those blinded later, as well trying to understand how different it is or how similar for those who can see but still cannot rely on primary visual input for most of their daily activities and social interactions, vs. those who are sightless or virtually so. (And points in between. I know. But the dividing line between partially sighted and effectively functionally sightless must surely be somewhere beyond knowing whether the lights are on or off.)
I wouldn't go so far as to say that blindness "sucks" most of the time. I do recognize that it has a profound impact on my life in many ways whether I choose to think about that impact or not. Often I am too busy working around the barriers it puts up to think about the fact that it is limiting. This is a difficult concept to explain to a person who feels (as I perceive that Ken does) that failure to grieve the loss of sight causes problems in life. Of course, people who are in the midst of vision loss or who have recently lost vision experience grief and any number of other emotions. Society's perception is generally that a person can't miss what was never had; and often this places the congenitally blind person in an awkward position: that of being confronted (sometimes painfully) with various interpretations of the impact of his disability and being expected to maintain a positive attitude and courteous demeanor regardless of how others treathim. For some people, this conflict creates a "don't talk, don't feel" situation similar to what a person who is abused experiences. Those people who do discuss the negative aspects of life with blindness are expected (even by other blind people) to resolve the experience quickly.
For more discussion about the concept of grief as it relates to vision loss, please read my response to Dr. Tittle.