[nabs-l] Philosophical Terminology

[Carrie Gilmer]

Hello All,
I would like to interject my thoughts and experience with the terms we use,
and the consequences thereof. I add mine as a sighted person and as an
elected representative of (in the end in a practical and real manner) the
nation's blind and low vision children and their families. Until my own son
was eight we struggled and switched back and forth between partial, legal,
and low. When we met the NFB we learned it was fine, acceptable, and
accurate enough to just say blind. It was a relief to my son, and to me. It
is what he has chosen, and I have followed, ever since. I would like to
respond by going to some of Harry and Chris W.'s thoughts or points. 

On Harry's feeling: Thank you! This has always bugged me that people who are
merely legally blind or who read large print, or who are otherwise not
completely blind would call themselves blind. To me, if you have some vision
you are visually impaired...

My feelings: If we are thinking accuracy is primary...my thoughts are these.
The definition of impaired from the American Heritage dictionary: To cause
to diminish, as in strength, value, or quality...see synonyms at injure; the
origins or root in Latin is the word for to worsen. 

In the use of the term "mere": mere means nothing more than specified: So
Harry says, and others I have heard articulate the same, that using legally
blind is saying nothing more than the legally blind person meets the legal
definition. Saying it this way implies that they can see something. So they
are not in reality blind. Mere is also defined as small or slight. Does this
give an accurate answer to the public?

This is my experience. People think legally blind means "not really". The
law says, and I agree, it means, yes you are really; you are really in real
and functional terms. It is this "not really" mentality that is one of the
greatest causes of failure to succeed in education and employment and the
realization of true independence for those who have 20/200 and worse or a
field of less than 20 degrees. By definition in that definition, when you
rely on it, you compete with less than 10% of what others have 100% of. 

My son has 20/400 measured long distance in acuity in a perfect clinic
setting, with a total field cut of no vision below the nose, with some color
loss, with a high need for light, with other blind spots, with a worse
acuity in his central vision. The measured distance acuity alone in a
perfect setting for contrast and light and no movement gives him a 95% loss
from 20/20 just from the starting gate under, as I said, perfect conditions
which only exist in a clinic setting. For near distance he can make things
out, tell what they are fairly clearly, with light, and head tilting, and if
the contrast is good, and the font is simple and over 16 font in size and he
has magnification and he brings it up to within 3 to 6 inches of his face.
His near vision is not sustainable for longer than very brief periods of
use. So is it accurate to give someone the idea he is not really blind? Does
the impact of this profound loss in his ability to function using primarily
the sense of sight to accomplish everyday tasks get conveyed accurately by
saying his sight is slightly, or nothing more than, diminished in strength,
value and/or quality?

Where to draw the line? Do we really have a responsibility to draw it
exactly for everyone we meet? Is my son obligated to explain to everyone
curious exactly how he sees? He has had no personal experience in comparing
his vision to 20/20; that is the explanation sighted people try to reference
from. How can he compare something he has no experience with? If they then
come to some understanding from his description does that mean they
understand how the next visually impaired, or low vision, or blind person
sees? Must he constantly make sure everyone understands the difference
between the ability to see (something) and tell exactly what it is?

On the comparison with the deaf community. You should know that the deaf
community itself struggles, often vehemently, between sign language, and
cochlear implants, and learning to speak and read lips. There are strong and
oppositional philosophies. Most deaf people can hear something, the question
is can they accurately make out what that something is. Most blind people
can see something, the question is can they accurately tell what that
something is.

I have never heard of a deaf child, or one hard of hearing, who had their
hearing aids ripped out and told to leave them by the locker at school. I
hear this all the time where blind children with some low vision especially,
but "totals" too, are told to leave the cane by the door, in the locker, or
not use it at all. 

Are deaf and hard of hearing children who may be considered "not really",
denied sign language as much as "not really" considered blind children are
denied Braille? And let's not kid ourselves, the blind children are denied
Braille because primarily people around them want to consider them "not
really" blind.

This comes back to the stigmas of blindness. I see it on the faces of
everyone I meet. If I say this child is blind, the look of concern is grave.
And I use the term grave, as in serious, and death implied, purposefully. If
I then add, well, legally blind, they display visible and audible senses of
relief. The question is should they be relieved? It is that sense of relief
that I fight everyday.

Are deaf or hard of hearing persons considered obligated when speaking to
say that they are legally qualified to say they are deaf? Do we have legally
deaf, and legally using a wheelchair, qualifications? Is it faking it, and
considered lying, for a person who can stand or walk a little to go about in
a wheelchair and let others assume they cannot use their legs at all, not
ever, in any way? Not all people who go about in a wheel chair are totally
paralyzed from the waist down. What is their obligation to inform the
public? Should they have a sign on the back of the wheelchair explaining
when and how often they can use their legs? Something that indicates "not
really" paralyzed? Why do people get incensed? I'll tell you why. Because if
you are saying you are deaf, blind, or in a wheel chair, then I (typical
non-disabled person) feel a measured amount of feeling sorry for you, and if
you then say "not really" you have faked getting my sympathy to a much
higher degree than I feel I am morally obligated to give you. 

How does someone go about getting the measurement of just how much they
should feel sorry for someone else? This is the crux of the issue. It is not
about adding visually impaired as much as it has been the deletion and
avoidance of blindness. It is about wrongly giving some measured amount to
the "not reallys" and giving some measure more automatically to the
"reallys" based on the myths and legends about blindness. It is all about it
being respectable to be blind.

Does my son have some lack of understanding that the vision he has indeed
has provided some real conveniences and pleasures? No. He is likely to lose
it all, and in the next 5-10 years. Will he be blinder then? Not really, and
yes really. Will he miss what he has, and the conveniences? Yes, really.
Will he have any less ability to function and succeed, and enjoy life, and
find love and happiness? No, not really.  

We measure these things often by perceptional or learned value. Even in
race. Obama is 50% black, 50% white. Who speaks of him as a white man? In
his physical characteristics he looks like a black man. My son is 50%
Swedish and English, and 45% black and 5% Native American. If he picks one
box to check on the form, does he lie by excluding the others? Does he
always have to explain to everyone his full family tree? 

He is black, blind, and beautiful. He is also sighted and white and
beautiful.  He is also Blackfoot and Sioux and legally blind and beautiful.
Any of these headlines would accurately describe him to some degree. He is
Jordan. Totally unique. And all he is obligated to be is the best Jordan he
can be. It is his internal characteristics that will matter the most. What
he calls himself is his own right to call himself. That is what I have
taught him; as long as he is not purposefully trying to fool anyone for some
ulterior motive or denying calling himself something out of embarrassment or
shame. That is also what I believe the NFB has taught him. Have they gone
too far? I think not.

Another Sunday's 52 cents worth at least. Smile.

Carrie Gilmer, President
National Organization of Parents of Blind Children
A Division of the National Federation of the Blind
NFB National Center: 410-659-9314
Home Phone: 763-784-8590
carrie.gilmer at gmail.com
www.nfb.org/nopbc