December 7, 2004

Is Brittany Blind?

Posted in: Daily Living, Eye Conditions

A presentation to students of Music Therapy at the
University of Missouri, Kansas City
December 7, 2004

Presenter: Dan Roberts
Founding Director
Macular Degeneration Support

Introduction

Ten-year-old Brittany has been a music and composition student of mine for three years. She was born with a rare condition called anophthalmia, which translates as “without organs of sight.” Most of society, therefore, classifies her as a blind person.

Webster’s Dictionary defines “blind” as “without sight” and without “the faculty of vision.” It also defines “vision” as “the faculty of seeing [and] sight.” The terms are used interchangeably, meaning that Brittany, as a blind person, is without sight or vision.

Since about 80% of a human’s total sensory experience is gathered by at least one eyeball for transmission to the brain, it would seem that Brittany is operating at a significant deficit. Nature, however, has assigned those ophthalmic functions to her senses of hearing, touch, taste, and smell, in addition to specially-developed mental abilities that most people will never acquire. She possesses heightened levels of conceptualization, retention, audio frequency recognition (i.e. “absolute pitch”), spatial awareness, and creativity. When owned by people with all five senses operating at capacity, those abilities are called “gifts.” To Brittany, however, they are necessities, because they give her sight. Her abilities appear preternatural; but to her, they are like sonar to a bat: vital alternatives. Because of whatever rewiring her infant brain underwent, she can see as well as (or better than) most of us, just in different ways. Should we then label her “blind?”

Five Questions

I began my pursuit of the answer to the question “Is Brittany blind?” by listing all of the definitions for each of the words “see,” “sight,” “vision,” “eye,” and “blind” from Webster’s Online 1913 Dictionary and Princeton University’s WordNet Dictionary. For clarity, I eliminated duplicate definitions and then formulated them as yes/no questions about Brittany. All of my decisions were based upon objective personal opinions which I formed as her private teacher. The exercise, though blatantly unscientific, proved to be enlightening. [Note: For the benefit of people using text readers, my “yes” or “no” response follows each definition.]

Question 1: Can Brittany see?

(Source: WordNet Dictionary)

Can she . . .

1. make sense of? assign a meaning to? [yes]
2. perceive mentally? [yes]
3. get to know or become aware of, usually accidentally? [yes]
4. be careful or certain to do something? make certain of something? [yes]
5. consider or deem to be? regard? [yes]
6. deliberate or decide? [yes]
7. find out, learn, or determine with certainty, usually by making an inquiry or other effort? [yes]
8. match or meet in card games? [yes]
9. receive as a specified guest? [yes]
10. imagine; conceive of; see in one’s mind? [yes]
11. come together? [yes]
12. accompany or escort? [yes]
13. go or live through? [yes]
14. perceive or be contemporaneous with? [yes]
15. perceive by sight or have the power to perceive by sight [cf Question 2]? [yes]
16. see and understand? [yes]
17. observe, check out, and look over carefully or inspect? [yes]
18. watch? [yes]
19. observe? [yes]
20. date regularly? have a steady relationship with? [yes]
21. go to see for professional or business reasons? [yes]
22. go to see for a social visit? [yes]
23. visit a place? [yes]
24. take charge of or deal with? [yes]

(Source: Webster’s 1913 Dictionary)

Can she . . .

25. perceive by the eye [cf Question 4]? behold? descry? view? [yes]
26. perceive by mental vision? form an idea or conception of? note with the mind? discern? distinguish? comprehend? ascertain? [yes]
27. follow with the eyes or as with the eyes [cf Question 4]? regard attentively? look after? [yes]
28. have an interview with; especially, to make a call upon? visit? [yes]
29. fall in with? have [social] intercourse or communication with; hence, have knowledge or experience of? [yes]
30. accompany in person? escort? wait upon? [yes]
31. (Physiological) have knowledge of the existence and apparent qualities of by the organs of sight? [no]

Question 2: Does Brittany have sight?

(Source: WordNet Dictionary)

Is she capable of . . .

1. the act of looking or seeing or observing? [yes]
2. the ability to see [cf Question 1]? the faculty of vision [cf Question 3]? [yes]
3. a range of mental vision? [yes]

(Source: Webster’s 1913 Dictionary)

4. view[ing]? [yes]
5. opinion? judgment? [yes]
6. [Physiological] perception of objects by the eye[ball]? [no]

Question 3: Does Brittany have vision?

(Source: WordNet Dictionary)

Does she possess . . .

1. the ability to see [cf Question 1]? [yes]
2. the perceptual experience of seeing [cf Question 1]? [yes]
3. imagination? [yes]
4. sight [cf Question 2]? [yes]
5. visual modality? [yes]
6. visual sensation? [yes]
7. visual sense? [yes]

(Source: Webster’s 1913 Dictionary)

Is she capable of . . .

8. the act of seeing external objects [cf Question 1]? actual sight [cf Question 2]? [yes]

Does she possess . . .

9. the faculty of seeing [cf Question 1]? sight [cf Question 2]? [yes]
10. [Physiological] one of the five senses, by which colors and the physical qualities of external objects are appreciated as a result of the stimulating action of light on the sensitive retina, an expansion of the optic nerve. [no]

Question 4: Does Brittany have ‘an eye?’

(Source: Thesaurus)

Is she capable of . . .

1. accountability, vigilance, consideration, contemplation, conviction, discernment, estimate, examine, farsightedness, feeling, frame of reference, general belief grasp, judgment, keep[ing] in view, mental outlook, observation, personal judgment, view, viewpoint, theory, thinking, thought? [yes]

Does she possess . . .

2. [a] mind? [yes]
3. the faculty of seeing [cf Question 1]? power or range of vision [cf Question 3]? hence, judgment or taste in the use of the eye, and in judging of objects? [yes]
4. The action of the organ of sight; sight, look; view; ocular knowledge; judgment; opinion. [yes]
5. [Physiological] the organ of sight or vision . . . properly the movable ball or globe in the orbit, but [also] the adjacent parts? [no]

Question 5: Is Brittany blind?

In order to answer this target question completely, I needed to respond to a few more definitions, this time describing Brittany in reference to the word “blind.”

(Source: WordNet Dictionary)

Is she . . .

1. [a person with] severe visua l impairments? [no]

2. unable or unwilling to perceive or understand? [no]

3. unable to see [cf Question 1]? [no]

4. dim, dim-sighted, eyeless, irrational, sightless, unperceiving, unperceptive, unreasoning, unseeing, unsighted, visually challenged, visually impaired? [no]

(Source: Webster’s 1913 Dictionary)

5. destitute of the sense of seeing, either by natural defect or by deprivation; without sight [cf Question 2]? [no]

6. not having the faculty of discernment; destitute of intellectual light; unable or unwilling to understand or judge [no].

7. undiscerning; undiscriminating; inconsiderate. [no]

8. befogged, benighted, bit, choked off, cloaked, closed, clouded, compulsive, deprived of sight [cf Question 2], dim-witted, eyeless [cf Question 4], imperceptive, impervious, impetuous, impulsive, in a cloud, in a fog, inconsiderate, indeterminate, indiscriminate, indistinct, insensible, insensitive, irrational, mindless, misty, muddled, muted, mysterious, oblivious, short-sighted, stupid, uncomprehending, unconscious, undiscerning, unenlightened, unpersuadable, unreasoning, unthinking, unwilling, unwitting, visionless [cf Question 3]? [no]

9. [Physiological] bereft of [optical] light, in [optical] darkness. [yes]

I concluded that, other than physiologically, Brittany can see, she has sight, she has vision, and (by the majority of definitions) she even has “an eye.” In place of ophthalmic vision, she sees by sensory substitution. My job as her teacher, therefore, is to search for educational approaches suited to her unique learning processes. Basically, that means tossing out everything that requires ophthalmic input or photographic visualization (i.e. reading of musical notation) and using an extended version of a familiar method already set in place by Shinichi Suzuki in the mid-twentieth century.

Suzuki realized that making music does not have to depend upon reading notation. Such dependency began to evolve about 800 years ago when the compendium and intricacy of musical compositions surpassed the limits of the average person’s memory and skills. Brittany, however, is fully capable of creating, replicating, and remembering intricate music without notation, so imitation is her modus operandi. Through this gradually-advancing approach, she is building technique, studying the elements of melody, harmony, rhythm, and form, and learning the literature. Evidence of this training shows up in her compositions, which display ever-increasing levels of sophistication.

In spite of the blessings of sensory substitution, Brittany still has challenges. She lives in a world designed by ophthalmic people who create stairs, sharp corners, stop lights, printed words, color-coding, and poles in the middle of nowhere; who set their clocks by the daylight, judge one another by physical appearance, and communicate through pantomime; who turn red with embarrassment, blue with the cold, green with envy, and white with fear; who lower their eyes in shame, stare in defiance, and gaze in awe. Worst of all, Brittany lives in a world where “I see” means “I understand.”

“Somebody Moved the Door”

Prior to her piano lessons at my school, Brittany practices in another room down the hall, just past the waiting room. When it is time for our session, she exits the practice room, turns right, walks a few steps, and turns left into my studio. In the early days, I guided her, but she does very well without me now, except one time.

As she was getting ready to make her usual right turn, another student opened and shut the door to the waiting room just ahead of her. She immediately corrected by heading toward it. As I caught up with her to guide her in the right direction, she quietly said, “Somebody moved the door.” At first, I thought she was joking, but her embarrassment revealed otherwise. I had to restructure my thinking.

I reminded myself that Brittany doesn’t think visually. She doesn’t relate to things according to their positions in space. She receives direction from other sensory cues (in this case, her hearing), which can take precedence over physical memory and logic. I tried to imagine stepping out of that room and seeing what Brittany thought she heard: the exterior of my studio suddenly appearing in front of me, rather than to the right. My initial reaction would be one of confusion, which means I would probably stop and try to rationalize the change by assuming that I had simply turned right and forgotten that I had done so. I wondered, therefore, why Brittany not only didn’t hesitate, but how could she so easily believe that the door had been moved?

Then I realized that she doesn’t see the exterior of my studio. She doesn’t see anything in the context of its surroundings. She sees what she can hear, touch, taste, smell, and surmise. She sees only the smooth hardness of the door frame, and, at that, only the part she touches as she enters the room. To Brittany, that is the entrance: a strip of hard, cool wood no bigger than her palm, with no relation to structural surroundings of sheet rock, carpeting, and ceiling tiles. Her concept of “doorway” is filed in her memory as a kind of infobyte, not as a mental photograph of a door in some recognizable three-dimensional space. She heard a familiar sound, correctly interpreted it as “a doorway,” and, in the absence of any conflicting or affirming information, determined it to be “the” doorway.

Try this experiment. Stand a subject blindfolded in front of a ticking timer. Silence the ticking, then have the subject turn around three times, and walk toward the timer. While he is turning, circle the timer’s position 1/4 of the way around the subject in either direction. When he stops, restart the ticking. As he accurately walks toward it’s original location, he will assume that he is wrong and change directions. That’s how Brittany navigates. If the subject were tested without the blindfold, it would be obvious to him that you moved the timer, and he would not make the mistake of starting of in the wrong direction. Brittany, however, cannot remove her blindfold. She expects doorways and timers to stand still.

Not even buildings stand still in this visual sensory world we have created. We have become so inured to our sensory vision that we must constantly invent new ways to keep it busy and entertained. We have also devised ways to take advantage of it for our better convenience: electronic signals instead of traffic cops, steps instead of hills, film instead of personal experience and memory, printed words and musical notation instead of live communication. All such creations are appropriate and economical to the majority of the population; but without accomodation Brittany would be lost. She has sight and vision. If she is also blind, we are part of the reason.

How are we doing?

Our grade is improving in the area of accomodation, especially since the passing of the Americans With Disabilities Act. Electronic birds chirp at us when it’s safe to cross the street. Hills have returned in the form of ramps. We have descriptive movies, audio books, Braille, text-to-speech technology, personal satellite guidance systems, and even gadgets that beep when our coffee cup is full. We probably deserve at least a B for effort, as (admittedly, motivated mostly by financial gain) we develop new and better ways to help Brittany live in our ultra-ophthalmic world.

We are not yet, however, scoring well in Social Development. We don’t work and play well with Brittany, because we keep defining her as a blind person. We call her “special,” which is short for “different-in-a-way-that-we-don’t-understand-so-let-someone-else-deal-with-her-who-won’t-screw-things-up-like-we-probably-would.” Really, who is the blind person here?

At the age of five, I had a playmate named Karen, who was blinded by an accident with a glass bottle. We used to play one-sided hide-and-seek, where I would hide simply by standing quietly. She was very good at it, and we greatly enjoyed our game until my parents saw what I was doing and made me stop.

“It isn’t nice to tease a blind person,” they said.

“She isn’t blind,” I argued. “She always finds me.”

They told me I didn’t understand, and that was the end of it. So Karen went back to hugging stuffed toys with no sharp points, and I found other playmates. For a while there, Karen could actually see me. Then they made her special, and we were both blind.

So here are ten ways that we can work and play better with Brittany:

  • Try to spend a whole hour with her without thinking about her eyes.
  • Relate to her, not to her condition.
  • Imagine ourselves in her shoes, but don’t pity her for having to wear them.
  • Respect the abilities she has that surpass ours.
  • Praise her when she sees, and encourage her to keep looking.
  • Nurture her vision.
  • Maintain an honest heart, because she can see that clearly.
  • Remember that her only handicap is our ignorance.
  • Applaud her for succeeding the hard way.
  • Don’t identify her as a blind person.

Don’t identify her as a blind person? Then how can we identify her in terms of her ophthalmic condition? That’s a fair question, because sometimes such physiological identification is necessary. Brittany is a person with congenital anophthalmia: an “anophthalmiac,” or one who is “anophthalmic.” Those are specific labels that work very well, because they state an impersonal fact, allowing Brittany the freedom to create her own additional personae. If she is an anophthalmiac who is also blind (cf Question 5), then that, at least, is not a presumption laid upon her by others.

Of course, “blind” is still an appropriate description when the speaker and the listener understand the term in the sole context of Brittany’s ophthalmic condition (eg. a discussion between two of her doctors); otherwise, clarification is necessary. For example: “Brittany is blind to light,” or “Brittany is light-blind.” Still, the more accurate and economical choice is “Brittany is anophthalmic.”

The ultimate consideration is not so much the semantics of the word “blind,” as it is the connotation. Our understanding and how we demonstrate that understanding is what is important. Our thinking needs to be carefully and sensitively geared, because it guides our actions; and our actions affect how well we relate to others.

Brittany is anophthalmic, but her only handicap is a society that limits her by its own ignorance and failures. She has much to teach us. Let’s hope we’re not too blind to learn.

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