Future Reflections Fall 1995, Vol. 14 No. 3



by Barbara Cheadle

Individual freedom is highly prized in our culture. (Which, perhaps, is one of the reasons we so fear blindnessCbecause of the widely held misperception that blindness takes away our freedom.) We strongly believe that every person has the right to make choices and do with their lives what they wish. Not surprisingly, this attitude extends to our bodies and the whole issue of personal privacy and personal space. For example, Americans will not willingly sit with strangers in a restaurant. The place may be full of tables with empty chairs, but if there is one other person sitting at that table, then, as far as we are concerned, the restaurant is full. That's how strong our sense of personal space is. We have correspondingly powerful feelings about our bodies. Public displays of shaved heads, green spiked hair, nose rings, multiple earrings, and tatoos may be appreciated by some and despised by others, but it is tolerated by all. In short, what people choose to do with their own bodies (distasteful as it may be to others) is their business.

But this same tolerance leads us to an equally firm intolerance of those who violate the physical privacy of others. We are especially intolerant, of course, of physical and sexual abuse. But even violations of our social rules about touching are not taken lightly. We take the concept of "my body belongs to me" seriously. We consider it part of our right to individual freedom. Unless you are blind, that is; then a double standard is applied. Don't believe it? Think about what you know to be true about our social expectations and the concept of respect for others' physical bodies and personal space.

Sometimes there is uncertainty about what is acceptable and unacceptable social touching. The debate about what constitutes sexual harassment in the workplace is one example of our cultural expectations undergoing change. But most of us never think or worry about what is appropriate or inappropriate touching in our daily routines. The unspoken rules are so thoroughly ingrained in our behavior that we are only aware of them when someone breaks a rule, or we travel to another country where the rules regarding touch and personal space differ from ours.

We all know that it is perfectly acceptable, for example, to expect a hug and a kiss from great-aunt Emma (even if we haven't seen her in ten years), a firm handshake from our lawyer (which we may only see once a year), and no physical contact at all-only a distant nod and wave-from a neighbor we may have seen almost daily for twenty years. We expect our doctors to follow a certain protocol in a physical examination and we are uneasy or suspicious when strangers, or even casual acquaintances, get too close or touch us too much in social situations.

Although children are necessarily touched more frequently, there are clear distinctions and expectations regarding acceptable, and unacceptable, social touching at each level of development. A two-year-old toddler is vocally outraged if he or she is picked up or cuddled like a "baby" when they are trying to assert their new-found maturity and independence. A seven-year-old is appropriately offended if touched or handled as if he or she were still a toddler. And God help the parent who attempts to hug a teen-age son or daughter in public!

It would seem reasonable to assume that the same social standards regarding touch should apply equally to the blind. Even if one made the questionable assumption that all blind persons need more physical assistance than others, is it not consistent with current practice to assume that one should first ask if help is needed, and, if so, how the help is wanted. On the contrary, all sense of what is respectful, proper, or improper seems to disappear when an ordinary member of the public encounters a blind person. The only standard which seems to apply is: "If he or she is blind, grab 'em!" Over the years I have watched strangers and family members alike physically push, pull, and tug blind individuals-children and adults-about with nary a "By your leave" or "May I help you?"

I admire my blind friends (adults) who handle this unwanted, unsolicited "laying on of hands" with firmness, dignity, and good grace. I remember the time years ago when a blind friend and I walked into a highway rest stop bathroom. My friend was standing close to the towel dispenser, waiting her turn for a stall, when in came a gaggle of matronly women. Spotting my friend, they assumed that she was trying to find the towels. Talking non-stop they grabbed her (literally), "dried" her hands, and physically handed her back down the line till she was out of the bathroom. It happened so quickly Marsha was too stunned and shocked to even speak. But she quickly regained her composure, quietly used her cane to walk back in, and located her place in the line. Needless to say, the women were chagrined, maybe even a little put-out. They didn't apologize, but they didn't make a grab for Marsha again, either.

Adults who have had some training and have developed some confidence in themselves can pull this off. But what can children do when this happens to them? Worse, what happens if parents and family members follow the "grab 'em, push, pull, and tug" model? If they have never experienced anything else, will children have any choice but to accept this physical pushing and pulling with passive resignation? What, I wonder, are they learning about themselves? Do they believe that "My Body Belongs to Me" in the same sense that we expect sighted children to understand this message?

What should a blind child learn to expect from others in regard to respect for their bodies and their personal space? Should the social rules we follow for sighted children be applied to blind children, or do blind kids require a special and different set of "touching" rules? If so, where do we draw the line? Hands and arms may be grabbed without permission, but not the waist? What about the head and shoulders? Who is allowed to grab them without permission and who isn't? What can they say or do to prevent being touched against their wishes? For that matter, do blind children have a right to such wishes at all?

It is likely that many parents and educators have never considered these questions, at least consciously. Our cultural expectations regarding social touching are usually taught through modeling and admonition. We don't even think about it as we do it. Nor do we usually think about it when we flout the normal standards and apply a different set of expectations for blind children. We simply follow the dictates of the stereotypes we have learned.

But some people do think and do change this pattern. (I refer the reader to the articles "The Helping Hand Syndrome" and "Guiding Hands" in this issue.) The parents of Niki and Martha, two blind girls I have known almost since birth, decided early on to follow a different path. Niki's family read about blindness, joined the NFB, attended conventions, thought about what they learned, and made a conscious decision: they would treat their daughter in all ways with the same respect and expectations with which they planned to raise their sighted children. Martha's mother, who is blind herself, came to the same conclusion but from a different set of experiences. She not only had the collective experience of the NFB upon which to draw, she could apply the best from her own upbringing and avoid (or try to) the mistakes her parents and teachers had made.

But there was one thing neither set of parents could do: they could not magically make every adult in their child's life believe and behave this way. We prepare our children the best we can, but eventually they must meet and deal with the world as it is. Usually this happens when a child first goes away to school. And that's what happened to Niki and Martha.

Beginning around the first grade or second grade, they gradually became the hapless victims of the "grab 'em, push, pull, and tug" model of "handling" the blind. If spotted in the attempt to go or do anything by themselves, janitors, kitchen workers, secretaries, and teachers would drop what they were doing and grab a hand, an arm, or even the cane and insist on helping. The girls couldn't go to the bathroom, the lunchroom, the playground, or the bus without an adult rushing in to give them a guiding hand. One classroom teacher deserted her class when she spotted one of the girls passing her classroom on the way to get a drink of water. She was afraid the girl would get lost. But by far the worse culprits were their school aides. (As is common practice today, each girl was assigned an aide to help her in the classroom.)

Both girls complained to their parents about this treatment. Niki's mom had the opportunity to see for herself what was going on. She went to the school and sat in her daughter's class for a few hours. She was appalled by the aide's behavior, especially during a story time activity. All the children were to sit on the floor facing the teacher who would read to them. Since this activity required no assistance, the mom assumed the aide would leave the room, or at least stand quietly in the back. She did not. Instead, the aide sat on the floor and positioned the seven-year-old girl between her legs as if she were a two-year-old toddler. Adding insult to injury, the aide proceeded to physically move and tilt the girls head toward the teacher. She didn't whisper or suggest that the girl look at the teacher, or tell her quietly where to look. She didn't ask permission-she just grabbed her head and moved it.

It was no surprise to the parents that the girls objected to this type of treatment. Both girls had been raised with the positive, can-do philosophy of the Federation. They had canes as soon as they could walk, and they used them. They were not of a mind to take all this grabbing and pulling-even if it was from adults at school-meekly or without protest. It wasn't that Martha or Niki wanted to be disruptive or rude. They just couldn't see where it was such a big deal to go down the hall to the bathroom by themselves. But many of the adults, especially the school aides, didn't take kindly to these protests. From their perspective, they were only doing their jobs-one aide even stated it that way-"It's my job to be by her side all the time." Soon, Martha and Niki were being labeled "uncooperative and disrespectful." They were admonished for "back-talking the teacher" or accused of "not knowing when to accept help" when they resisted unnecessary assistance. But by far the most astonishing-and chilling-remark came one day from Martha's aide. The aide had developed the unpleasant habit of grabbing Martha by the shoulders and steering her down the hall. Finally (on the advice of her mother to whom she had complained about this embarrassing situation), Martha asked the aide to take her hands off her shoulders-she had her cane and she could walk and find the turn by herself. The aide angerly told Martha "I can touch you whenever I want to; it's my choice."

Fortunately for both girls they have tough-minded parents. These parents had been tough on themselves, deliberately choosing to hold normal expectations for their children despite feelings of guilt and fear for their safety. Now they were ready and willing to be tough and demand that others treat their children also with respect and high expectations-even if they didn't understand why or yet believe in the need to change their behavior. Today, Niki is in a different school. It's not perfect, but there is no longer an aide hovering over her. The experience with the other aide did not break Niki's spirit. She recently began taking private piano lessons. Her teacher has never taught a blind child, and neither mom or dad, who both work full-time, had the time right away to talk much about blindness and expectations with the piano teacher. As it turned out, they didn't have to. Niki took care of it. The first time the teacher attempted to take her by the hand, Niki pulled away and informed her-in typical eight-year-old fashion-"Hasn't anyone ever told you how to treat a blind kid? You don't grab them-this is what you do," and proceeded to give the instructor a lesson in sighted-guide etiquette. The piano teacher, by the way, is delighted with Niki and took no offense at her impromptu instruction.

As for Martha, she is still in the same school with the same aide. The aide is clearly a little puzzled about the whole affair, but she no longer hovers by Martha's side every minute, and she is learning to respect Martha's wishes about physical assistance. A letter from the National Office of the NFB, an NFB volunteer advocate at an IEP meeting, the moral support of the mobility instructor, and the continued persistence of mom convinced the administrators and teachers to change their behavior. Attitudes still lag behind, but those, too, will change as they see Martha grow and flourish.

At ages eight and nine, these girls know that their bodies belong to them. Help is welcome (sometimes), but under their terms and under their guidance-not someone else's. They cannot yet turn down help with the tact and grace my friend Marsha displayed-after all, she was an adult in her thirties. But they are as polite as any child their age can be; and that's all their parents want-a normal kid.