Even now, after a lifetime of such experiences, the incidents still bother her.
"I'll be sitting with a friend in a restaurant, and the waiter will come over to our table and say to my friend, 'Would she like more coffee?'" says Camille Caffarelli. "My friends are used to it by now. They'll say, 'I don't know, why don't you ask her?'"
Caffarelli is blind, and many people assume she's helpless. "People think of blind people as children; they don't think of us as equals or adults," says Caffarelli. "It's like the way some people shout at deaf people. You don't have to shout at them. It won't make it easier for them to read your lips. But people don't quite know how to approach us."
To promote better understanding of the blind and to encourage mainstream institutions to make their services accessible to the Chicago area's 40,000 blind residents, Caffarelli helped found Horizons for the Blind in 1977. Now with a staff of six, a budget of $200,000, and 100 volunteers, the nonprofit group publishes craft books and cookbooks in braille and works with about 200 museums, restaurants, businesses, libraries, and churches all over the Chicago area.
"Making our collection accessible to the blind and visually impaired is a great idea that has no downsides," says Kathi Lieb, education curator of the Spertus Museum of Judaica. "It's also a nice way to work with senior citizens or other visually impaired people who are not completely blind."
"Those who can see may not think about it, but there are hundreds of things we use our eyes to depend on every day," Caffarelli says. "If you walk into a hotel, you read directions to get to the clerk's desk or to your room or to the vending machine; once you're at the vending machine, you use your eyes to spot the Diet Coke or regular Coke. We help museums prepare exhibits; we help restaurants write their menus in braille or hotels provide directions in braille. We're now working with the taxicabs of Chicago to have them put information like the driver's name and phone number in braille. We're part of the larger movement to make society more accessible for people with disabilities. They're not going to hide us away like they used to."
When she was growing up, says Caffarelli, little thought was given to the needs of the blind. Born in 1946, she lived for the first few years of her life in a predominantly Italian west-side neighborhood.
"Blind people are what I call the lateral minority," says Caffarelli. "That means we grow up in families where no one else is disabled--our disabilities are all so hard for us and our families to adjust to. They have no prior experiences to measure them against. In my case, I was born premature. They put me in an incubator where there were large amounts of oxygen, and that messed up my retinas. I have never been able to see."
When she was young, her family moved to west-suburban Elmhurst. But Caffarelli was bused to a public elementary school in Chicago.
"The Elmhurst schools didn't have resources for blind kids," she says. "I went to the Bell School, which has special programs. I learned braille, and they taught me how to type when I was in the third grade. We'd get social studies with the regular kids. And then when the other kids were doing art, or whatever, we did typing.
"I didn't mind going to Bell, but [after grade school] I really wanted to go to York High School, which was my local high school. It was just a few blocks away from our home. I never thought they wouldn't take me. I was a good student; I was pretty much a straight-A student. Well, I went to York for the first day of my freshman year but I never got assigned to a classroom. They put me in a room and said, 'We don't have a place for you.' Hurt? I cried like crazy. I didn't think I was different. But the school said I was different. There was nothing my parents could do. They were learning about this stuff as they went along."
Like many other blind kids from the suburbs, she was bused to Foreman High School, a northwest-side public school. "Foreman was fine, but that's not the point--the point is that you don't want to be separated," Caffarelli says. "To a degree there is no reason to separate you. OK, blind kids should take typing and learn braille. But they can do almost everything else. Separating us only reinforces a lot of the bad things I noticed as I got older. Blind kids will get lots of accolades, they can get the highest academic honors; but they won't win any popularity contests. No way. We look different."
The big push to found Horizons came when Caffarelli's husband, John William Myers, died of a brain tumor in 1977. Caffarelli needed a job. "I had three kids--one four, one eight, and one nine--and I had to figure out a way to support them," she says. "I didn't want to go into the typical things blind people got into, like operating a newspaper stand. I'm not knocking that. It's just not something I wanted to do."
A friend who is not blind, Junia Hedberg, helped Caffarelli found Horizons; they got an initial $20,000 grant from the city's Department of Human Services.
"We'd been thinking about it for a while, and the time was right," says Caffarelli. "One of the first groups we worked with was the Botanic Gardens. They wanted to do a special trail for the blind. That made me think: 'Did God make trees and trails for blind people, or did he make them for everyone?' I didn't say that. That's too crass, and I was too young and naive to be so crass.
"Somebody suggested that we put ropes on this trail to help the blind people find their way. I said, 'No, let's do something more subtle, like wood chips. With wood chips you can feel your way around the path.' We had a railroad tie embedded into the ground wherever there was a sign explaining what was on the trail. And of course the writing would be in braille or large print."
Special trails and special schools shouldn't always be the answer; the point is access to mainstream services. Caffarelli adds: "A lot of access has to do with attitudes: it may be hard for sighted people to understand at first, but just because I don't look at you when we talk doesn't mean I can't understand you. Getting people to realize that is a sensitivity issue. It's like getting museums to realize that blind people might want to come there. I remember when we first talked with the people at the Shedd Aquarium--they've been very helpful, very accommodating--but at first they didn't know how they could help us. They said, 'We can't let you go into the tanks.' Obviously, but you can take something--like plankton--out of the tank and let us feel it. They can build clay moldings of the dolphins and fish so we can feel what they look like. After a while we worked with them and made the moldings."
Most museums have been cooperative.
"I remember when Camille first came here to tour the collection," says Lieb of the Spertus Museum. "We had a wonderful time, and I told her all about Jewish life and ceremony and took her through the museum. When the tour was over she said, 'Kathi, this is all great. But you could have told me this sitting in a room. Everything you showed me is behind glass. I can't touch anything.' I said, 'You're right,' and we sat down to figure out how to make it real."
Since then Spertus has opened much of its permanent collection to the blind, allowing them to feel ancient prayer shawls, Torahs, and a variety of archaeological artifacts.
"Our current exhibit is on 50 years of photojournalism in Israel, so other than printing captions in braille there's not much we can do," says Lieb. "But the rest of the museum should be of great interest to blind people."
It is more difficult for museums like the Art Institute to cooperate with Horizons.
"I think the Art Institute's attitude is that most of their collection would be irrelevant to a blind person, and the rest of it--well, they wouldn't want someone handling valuable statues," says Caffarelli. "They may be right about the first point, particularly with people who have been blind all of their lives. You can't really describe color. I mean, red is hot, but it also means stop. Blue is cool, but you can also have blue flames. Describing color can be irrelevant to someone like me.
"But you can take pieces of sculpture and bring them to a central space where people by appointment can feel them. They've got sculpture sitting in storage rooms just collecting dust. Why shouldn't we touch them?"
Certainly there are no reports of damaged property from other museums that have worked with Horizons. "Quite the contrary," says Lieb. "People who are used to using their hands or fingers are extraordinarily careful. They move slowly with their fingers because they're taking time to decipher information."
Getting the Art Institute to update its antiquated attitudes and policies is just one of Caffarelli's goals for the next few years. "There's so much that has to be done," she says. "The city of Chicago sends us and every social service and community group a newsletter that has all sorts of pertinent information in it--but it's not in braille. Well, what good is that to us? Why not print it in braille? You try to channel your frustration into constructive action, but it can be tough. If you have enough of those days when you want to go to York High School and you can't, it's going to get to you after a while."
Art accompanying story in printed newspaper (not available in this archive): photo/Jon Randolph.