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Karen Garofallou: A Lifelong Passion for AdvocacyBy Kathi Wolfe Most of us don’t begin to fight for our self-respect or our rights until we’re adults or, at the earliest, adolescents. Karen Garofallou, director of programs and services of the Independent Living Center of the Hudson Valley (ILCHV) in Troy and Hudson, N.Y., became an advocate at the ripe old age of 6.
“We’re kids, and we taunt each other,” she said. “I was the easiest one for them to pick on because my parents couldn’t hear them.” At that age, she’d already learned to protect her parents from such taunts, Garofallou said, adding, “I didn’t tell them what the kids had said.” But Garofallou, who went to a Catholic school, was upset by the incident. “The kids said my parents are ‘dumb!’” she said the next day to Sister Mary Grace, one of her teachers. “She explained that the word ‘dumb’ meant that you couldn’t speak,” Garofallou said. “That’s how she justified (it). This was 1966.” 
Her father, a printer, blew up when he heard the Sister’s explanation, she recalled. “He went to the principal, and my teacher had to write him a letter of apology,” Garofallou said. “That’s when I learned (that) ... how you use language is important.” Fast-forward a few years and Garofallou is in history class in the seventh grade. “We were ... talking about the 1800s, schools for the blind, Dorothea Dix,” she said. “There was something in our books about the ‘deaf and dumb.’” Garofallou hadn’t forgotten her earlier experience with the word “dumb.” “I said, ‘You can’t say ‘deaf and dumb,’ ” she said. After college, Garofallou returned to coach her former school’s girls basketball team. The students had the same teacher as she had. They told her that the history teacher said to them, “You can’t use the words ‘deaf and dumb,’” Garofallou said. Speaking out against demeaning language made an impact, “probably for the rest of that teacher’s life. It impacted many other people, too, because every year she told her students (to avoid the offensive term).” Garofallou learned early on that being an advocate can help other people live independently. When she was 7, her father had a friend, also a printer, who was looking for work. “My dad had worked for the Schenectady Gazette and knew that you could call in and see if they needed a sub,” she said. “That’s how you would get your foot in the door.” (There were no TTYs or telephone relay operators at that time.) Recalled Garofallou: “I can see the deaf man right in front of me as I made this phone call, asking for the chairman. ‘Do you remember my father? ... He has a friend ... Do you need a sub tonight?’” As a result of her call, her father’s pal subbed that night and later was hired full time. “That man just retired two years ago,” she said. That was Garofallou’s first “26,” a term used by rehabilitation counselors to indicate that a consumer has found employment. Garofallou’s precocious advocacy foreshadowed her career. After earning a bachelor’s degree in special and elementary education from the State University of New York College at Geneseo, she became a sign-language interpreter. She has worked in the independent living movement since 1983, when she joined the staff of the Capital District Center for Independence in Albany, N.Y. There, Garofallou wore many hats. “I was deaf services, independent living skills specialist — maybe housing (specialist),” she said. In 1987, she began working at the ILCHV. Garofallou thinks a lot about what she calls the “big picture” of the independent living movement. She has a cross-disability approach to the movement; she sees it as a “big tent” where people with all types of disabilities are welcome and can work together. “It’s wonderful that it’s a place (where) you can come in and whatever your disability is, that’s going to be acknowledged and respected,” Garofallou said. But Garofallou isn’t naive about the tensions that can develop within the independent living movement. “(Just) because you slap IL on it doesn’t mean everybody’s going to have the same knowledge and understanding or even acceptance of certain things,” she said. It could be that “there’s a certain person in a disability group (such as a deaf person), who feels ‘That’s not for me,’ for whatever reason.” But that’s OK, she said. “If you can (say), ‘I am a deaf person working at an independent living center, but not everybody knows sign language and not everybody’s willing to learn (to sign). So how does that make me feel as the one deaf person working at an independent living center?’” Sometimes there are cultural differences between those with varying disabilities, Garofallou said, particularly in the case of hearing and deaf people. To begin with, many deaf people “don’t see themselves as having a disability even though they are included in the independent living movement and benefit from disability rights,” Garofallou said. “They see themselves as being culturally and linguistically separate” because they use sign language to communicate. There are other dissimilarities, too, Garofallou noted. For instance, two deaf people talking in the hallway at a center should be aware that “hearing people (entering the area) are looking for a way to go through because they wouldn’t want to walk in between two people talking,” Garofallou said. In this situation, hearing people shouldn’t interrupt the conversation but “should just pass through. There probably is a way to wait for the conversation to get to that point or just acknowledge ‘excuse me.’ It’s not a big deal.” Some deaf people can be quite frank, Garofallou said. “If they haven’t seen you in awhile, they might say that you’ve gained weight. This might seem too blunt to some hearing people.” On the one hand, deaf people need to learn that hearing people may feel that such comments are impolite, Garofallou said, but “on the other side, hearing people need to learn that deaf people may just be being straightforward (with no intent to be rude).” Hearing people should make sure to talk in the direction of someone who’s deaf during a conversation “so that the deaf person can be looking at their face,” Garofallou said. You may not use sign language “as your communication mode, but you want to be looking the right way and not cover your mouth,” she added. These are just some of the challenges encountered by the independent living movement as it accommodates “a lot of diversity,” Garofallou said. But “I don’t know if I would say it’s really hard work. When people come to independent living, they’re coming because it’s like a common ground.” Everyone with a disability is “a little bit different from the mainstream,” Garofallou said. Because of this, there is a willingness to say, “‘OK! I use a wheelchair, but you use sign language. If I didn’t have my wheelchair, I wouldn’t get around, and if you didn’t have sign language, you wouldn’t have communication.’” Many people with disabilities, despite their differences from one another, view themselves as an affinity group – as outsiders from the cultural norm, Garofallou said. “We had a blind woman and a deaf woman who could speak, share their experiences,” she said. “Both of them had an ‘aha! moment.’” They realized, “even though you’re deaf and I’m blind, we have this common piece between us.” The beauty of the independent living movement is that “you’re always conscious of what you need to be aware of, (such as) you need to tell a blind person when you’re leaving a room,” Garofallou said. “If your boss uses a wheelchair, you wouldn’t put her favorite coffee mug on the third shelf in the cabinet.” Though she identifies with culturally deaf people, Garofallou moves easily between the hearing and deaf communities. From the get-go, she has been what she calls “bilingual.” She learned sign language from her parents and uncle (who was also deaf) but, at the same time, spoke English with her grandparents, cousins, siblings and other hearing children in the neighborhood. This ability to cross cultural barriers is in Garofallou’s DNA. Her parents met on a blind date. “My dad signs and my mom signs now, but when they met my mom (only) spoke and read lips,” Garofallou said. Her father, who graduated from St. Mary’s School for the Deaf in Buffalo, N.Y., was taught to sign. Her mother, a graduate of Clark School for the Deaf in North Hampton, Mass., was taught to speak and read lips but not to sign. “A friend of my dad’s interpreted for them,” Garofallou said. “He went to school with my mom so he could speak and read lips as well as do some signing.” After the date, her father wrote her mother a letter. “My mom told her mother, ‘he writes good English; I’ll take another date with him.’” Despite the initial problem with communication, her mother learned sign language. Her folks celebrated their 50th anniversary in August. Kathi Wolfe is a Washington, D.C.-area writer and poet. She writes frequently on disability issues. |
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Garofallou, now 48, vividly remembers her first foray into advocacy
during her youth in Schenectady, N.Y. One evening when she was in the first
grade, Garofallou, one of three hearing children of deaf parents, heard the
doorbell ring at her family’s home. When she answered the door, she was
taunted by children who attended her church. There had been a reading during
the worship service from the “Gospel about Jesus healing the ‘deaf
and dumb’ man,” Garofallou said. When they heard that, they jumped on
it, she recalled. 
