Read the story of Ro Vargo and share your thoughts regarding full inclusion. Then, summarize research on the advantages and challenges of full inclusion, including a discussion of ex

Voice of Inclusion

From My Friend, Ro Vargo

Rosalind Vargo and Joe Vargo

A school should not be a preparation for life. A school should be life.

—Elbert Hubbard

It was Tuesday, a beautiful autumn morning at Syracuse University. Ro had just finished her class “Topics in American Music—20th Cen- tury” in Bowne Hall and was walking back to the car (with my assis- tance) to go home. Joe, Ro’s dad, was waiting in the car. He and I looked at each other and at Ro and wondered how we had gotten here. After all, it seemed like only yesterday. . . .

Kindergarten

Among our vivid memories is kindergarten and Ro’s first invitation to a birthday party. Kristen’s mother phoned to ask if she should make any special arrangements for Ro to attend. Fighting back tears, we responded, “No, but thanks for asking.” Kristen’s mom said her daugh- ter was so looking forward to Ro coming. Then we said it: “We love Ro because she’s our daughter. But do you know why other kids like her?”

The mom replied, “Well, I can speak only for my daughter, Kristen. She says she likes Ro’s smile and that Ro is someone you can really talk to . . . and that she wears really neat clothes.” Kristen’s mom continued, “I think kids like Ro because she isn’t a threat to them; they can just be themselves around her.”

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C o p y r i g h t 2 0 0 5 . A S C D .

A l l r i g h t s r e s e r v e d . M a y n o t b e r e p r o d u c e d i n a n y f o r m w i t h o u t p e r m i s s i o n f r o m t h e p u b l i s h e r , e x c e p t f a i r u s e s p e r m i t t e d u n d e r U . S . o r a p p l i c a b l e c o p y r i g h t l a w .

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2nd Grade

In 2nd grade, we invited several kids to Ro’s birthday party. Because we would be picking them up at school, we needed to know who would be coming. The night before the party, we called Eric’s mom and politely asked, “Is Eric coming to Ro’s party tomorrow?”

She said, “I’m sorry I didn’t call you, but Eric said he just told Ro in school yesterday that he was coming. Was that all right?” It was more than all right! To Eric, the fact that Ro couldn’t talk didn’t mean that she couldn’t understand him.

Shortly thereafter, while attending Mass on Sunday, we reflected on how feverishly we had worked to get Ro into regular school to expose her to real-life learning and living. We began to feel guilty about why we had not persevered in getting Ro involved in our church as well. Because Ro was regularly going to Mass now, we thought it might be the right time to approach our pastor about hav- ing Ro receive First Holy Communion with her age-mates.

Somewhat apprehensive, we met one evening with the pastor, bringing Ro along. Thinking we would have to justify her inclusion, we had our appropriate scriptural references and detailed notes to build our case. To our surprise and delight, our pastor agreed whole- heartedly. He said, “You know, we are the ones with the hang-ups, not Ro. We make all the rules so that people like Ro can’t receive Commu- nion.” He continued, “You know, I’m excited about Ro receiving our Lord, but I am even more excited about what effect Ro will have on our lives and our parish families’ lives when she does.”

When First Communion Day came and Ro approached the altar, her dad, Joe, recalls being unable to talk or move after she received Communion. His feelings were testimony to what had hap- pened not just for Ro but for many of us. The liturgy ended with hugs, kisses, and tears of renewed belief that Christ was alive in our midst through Ro. A non-Catholic friend, unaware of the spiritual signifi- cance of the day for us, said she was intensely moved by seeing Ro in a seemingly transfixed state. Her reaction brought back memories of our pastor’s words about the potential effect of Ro’s Communion on others’ lives.

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4th Grade

In 4th grade, a time when pressure to have the “right” clothes and hairstyles had already begun, Ro was voted “Best Friend” by her 25 “typical” 4th-grade classmates. Somehow, Ro’s inclusion in the school life was making a tremendous difference in many kids as well. Her “giftedness” was recognized and celebrated.

We recall another night when a puzzling phone call came for Ro. Sharing the same nickname as my daughter, I thought the call was for me and I replied, “Speaking.”

The young girl at the other end of the line clarified, “No, I’d like the Ro who goes to Ed Smith School.”

I said, “Hold on,” and exclaimed to Joe, “Someone wants to talk with Ro on the phone!” We got Ro from the dinner table and put the phone to her ear. Immediately recognizing the voice of her friend Ghadeer, Ro started laughing. She then nodded her head to indicate “yes” and followed with a head shake indicating “no.” Curiosity got the best of me and I took the phone, reporting to Ghadeer, “Ro’s lis- tening and nodding her head.”

Ghadeer said, “Great, I’m asking her advice about a birthday present for a friend. Now, did she nod ‘yes’ for the jewelry or ‘yes’ for the board game?”

Ro’s 11th Birthday

We remember with pleasure Ro’s 11th birthday party. Before the party, the mother of one of Ro’s friends called to ask if the present she had picked out for Ro was OK. Apparently, her daughter hadn’t been with her when she went shopping. She had just wrapped it and given it to her daughter to take to school that morning. She wasn’t sure if the gift was the “in” thing and feared that her daughter would die of embarrassment if it weren’t.

She had bought a jump rope for Ro—a deluxe model. Without hesitation, I said that it was a wonderful idea and a gift that Ro would love using with her sisters.

From My Friend, Ro Vargo

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With a sigh of relief, the mom responded, “Well, I am glad. I was hoping that Ro was not handicapped or anything. Is she?”

For the life of me, I wanted to say “No” and save this mom obvious embarrassment. So I said, “Well, a little bit.” After many of her apologies and my reassurances, we got off the phone as friends. She had made my day, my week, my life! The thought that an 11-year-old girl had received a birthday party invitation, wanted to go, and asked her mom to buy a present, never thinking it important to mention that her friend had a dis- ability, still makes me cry with wonder and happiness.

A later message of acceptance and love came at the birthday party itself when Ro opened the present. Remember that the girl had no idea what her mom had bought. She did know that her friend Ro had three occupational therapy and three physical therapy sessions a week and attended an adaptive physical education class.

When Ro unwrapped the jump rope, all the girls were elated, shrieking, “I hope I get one of those for my birthday,” and “Oh, cool.” The girls immediately dragged Ro down the stairs and out- side to the driveway, where they tied one end of the jump rope to her wrist. With the strength of her twirling partner, Ro was able to rotate the rope for her friends. It was Ro’s best adaptive occupa- tional therapy activity in months.

A Gift for Ghadeer

Probably the most profound testimony to inclusive education occurred in January l993. Ghadeer, Ro’s friend who had called to ask for advice on gift selection, suffered a cerebral hemorrhage, or severe stroke. At the age of 12, she was comatose for almost four weeks. Teachers had prepared classmates, including Ro, for Ghadeer’s imminent death. However, after weeks of having family, teachers, and friends read at her bedside, Ghadeer miraculously, although not completely, recovered. Her voice and articulation were so severely impaired that she could not communicate orally. To the amazement of the child’s doctors and nurses, her disability did not stop her from communicating; she began to use sign language. An interpreter was quickly found who asked Ghadeer, “Where did you learn sign language?”

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Ghadeer replied in sign, “From my friend, Ro Vargo!” After four months of intensive rehabilitative therapy, Ghadeer

returned to school, but now as a “special education” student requir- ing speech and language services plus physical and occupational therapy. Her family proudly reports that Ghadeer turned away the “special” bus and rode the regular school bus on her first day back to school. Furthermore, she advocated for herself to get a laptop com- puter to assist her with her schoolwork. Inclusive education enabled Ghadeer to get to know someone like Ro and to learn about augmentative communication systems and her rights, particularly her right to be part of her school, class, and friendship circle. She had learned that a person can still belong even if something unex- pected—like a disability—happens.

What’s Hard About Being Ro’s Friend?

Ghadeer was one of many of Ro’s friends who became quite capable of articulating for themselves what Ro meant to them and the kinds of things that they learned at school with her. That relationship became clear when Ro and a group of her friends responded to ques- tions from parents and teachers in a session titled “Building Friend- ships in an Inclusive Classroom” at a national education conference that they attended.

Tiffany said, “I think Ro should be in class with all of us because how else is Ro going to learn the really important stuff? Besides, we can learn a lot from her.”

Teachers asked Ro’s friends some unusual questions, such as, “‘Have you ever discussed her disability with her?”

Stacey replied, “No, I know she is different, but I never thought it important to ask. Like, for instance, I never thought to go up to a black kid in my class and say, ‘You’re black. How come you’re different?’”

A “popular” question among teachers and parents—judging by their nods—was “What is the hardest thing about being Ro’s friend?” As Ro’s parents, we held our breath, waiting for responses such as “She drools,” “She walks funny,” or “She’s a messy eater.”

From My Friend, Ro Vargo

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But again Stacey spoke up, saying, “The hardest thing about being Ro’s friend is that she always has a parent or an adult with her.” Ouch! That hurt. But Stacey’s observation taught us, Ro’s parents, an important lesson that will surely have a positive effect on our daugh- ter’s future.

Transition to Middle School

The transition from elementary to middle school was tough socially for Ro, as it can be for any adolescent. For Ro, the first months were spent in isolation, but her isolation was not one of physical proximity. Ro attended a regular 6th grade program and had to gain acceptance from her new middle school peers. Initially, she was ignored or stared at; a few classmates even teased her. When Ro was assigned to a work group, no group members complained out loud, but Ro noticed non- verbal signs of rejection. In those first months, we began to doubt our decision to include Ro in middle school. We recalled the comment a teacher from the previous year had made: “Middle school kids don’t like themselves. How can you expect them to like your kid?”

Mauricha, a classmate, became Ro’s closest new friend. It was Mauricha who broke the social barrier. Asked how the two became friends, Mauricha said, “I saw her. She saw me. We’ve just been friends ever since.” One night when I was taking Mauricha home, she looked at me and touched my arm. “You know, Mrs. Vargo,” Mauricha said, “lots of teachers think I’m friends with Ro cuz it gets me more atten- tion. That isn’t true. The truth is, I need her more than she needs me.”

Ro’s father and I would have to summarize Ro’s middle school experience as fairly typical. When reflecting on our other daughters’ experiences in middle school, we realize that there were many of the same issues: isolation at times, hot and cold friendships, recognition of and a growing interest in boys, physical changes, teasing, challeng- ing class work, and parents who didn’t know anything! Oh, yes. Ro went to her first dance and danced with Jermaine.

There were three particularly memorable highlights during Ro’s last year of middle school: Kristen, Mr. S., and the idea of going off to high school.

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Kristen Kristen joined Ro as her teaching assistant. The two immediately bonded. Kristen connected with Ro in a way that no adult had and understood the vision that we had for Ro. Kristen intuitively knew how to play the support role without getting in Ro’s way and her desire to connect with others. Kristen was talented—a gift.

Mr. S. Mr. S. was the gym teacher. He had the distinction of being the longest- tenured teacher in the building—35 years! He ran a tough gym class and did not tolerate poor behavior or interruptions of any kind. Of course, Ro was assigned to Mr. S.’s class. She qualified immediately as an “interruption.” Although Mr. S. was initially against having Ro in his class, he finally agreed—as long as she stayed in the corner with Kristen. As Ro practiced her physical education from afar, she caught the attention of a few students who believed that Ro was having much more fun than they were. Several times, students opted to join Ro dur- ing free time, and the numbers grew.

Under the circumstances (and with the help of Joe’s and my advocacy), Mr. S. realized that he was going to have to give in and let Ro join the group for fear of losing them all! Over time, Ro won over Mr. S., and he welcomed her to his class. On the last day of school, Ro came home with a whistle around her neck and a note from the princi- pal that read, “Mr. S. retired today after 35 years. He wanted Ro to have his whistle!”

Plans for High School The staff at the middle school had agreed to work with the staff at Henninger High School to prepare them for the six students with dis- abilities who would be transitioning to their building in less than a year. The dream of high school captured the imagination of middle school students, and Ro was no exception. One thing that Joe and I learned about this transition was to start the planning process early. We already felt as if we were behind because, although the new teachers had heard of inclusion, they were unfamiliar with the way Ro lived it! Joe and I thought: another school . . . starting over again . . . high school.

From My Friend, Ro Vargo

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Arrival at High School

On September 4, 1996, Ro and six other students with disabilities entered Henninger High School. Early on, Ro communicated, “I like the subject (zoology), and the kids and I have learned a lot. I have had some classes I didn’t like. It is hard for me when classes have no small groups and no homework for me. Sometimes there is too much information. The worst is when neither the kids nor the teachers talk to me.” Ro trav- eled to New York City for a weekend with her zoology classmates and teachers to research the zoos and wildlife preserves there.

Inclusive education in high school was offering Ro a whole new world of opportunities and choices. She joined the Key Club, a service organization that met twice a month. She accrued service hours through her volunteer job at a local day-care center. In the fully inclu- sive day care, Ro was acting as a role model for many young students with disabilities, as well as for the whole class and her fellow workers.

During her early high school years, Ro communicated many things to us in various ways. It was a time of painful sharing, as well as a time for action and reflection. Her “voice” gave us a clearer vision of where and what Ro wanted to do with her life. For example, when Ro developed frequent outbursts, both at home and at school, Joe and I worked with teachers and the school psychologist to get a better han- dle on what might be going on. One night, Ro’s speech therapist phoned us. She had promised Ro that she would call that night and dis- cuss the day’s session. Apparently that afternoon, Ro had become quite upset. She had typed something like “I want to go sitter,” the let- ters had spelled out C-i-n-d-e-r-e-l-l-a and something about Aunt Marge, and then she burst out crying. I honestly could not figure out where Ro wanted to go. The pieces were fragmented and made no sense. After I got off the phone, I shared the information with Joe.

He immediately said, “Don’t you know what she is talking about?”

I said no. Joe explained, “She’s talking about when Josie, her sister

[close to the spelling of ‘sitter’], went to the Christmas formal last weekend with Todd.”

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I didn’t know if we should laugh or cry. When Ro woke up the next morning, I asked her if she was upset because she wanted to go to a formal dance with a boy, have Aunt Marge take pictures, and look like Cinderella. She nodded, “Yes.” This painful revelation was especially hard for Josie. Early that morning, around toast and cof- fee, we committed to Ro that she would go to her junior prom, even if it was the last thing we did! From the smile on Ro’s face, I think she knew we meant it. (Ro attended not only the junior prom but also the senior ball.)

On the afternoon of her first volunteer job, Ro had to fill out an application. Her teaching assistant completed it with Ro’s input. However, 10 minutes later, Ro totally dissolved into a full-blown tem- per tantrum.

The panicked teaching assistant questioned Ro, “Does it have anything to do with the application?”

Ro nodded, “Yes.” “Was it #1, #2, #3 . . . .” until the question, “What has been your

biggest challenge?” Without consulting Ro, the teaching assistant had written

“Rett syndrome.” That was the one! Ro wanted it removed. Yes, the line about Rett syndrome.

Another time that Ro clearly expressed her thoughts was when she was nominated by her teachers for Student of the Month. She had to complete an information sheet for the committee who would select the winner. After much deliberation, Ro opted not to include any of her work with local university students and their numerous papers on her life experiences or any of her work with other girls with Rett syndrome. Basically, her nomination went in with just her name, age, and favorite teacher. Ro was making it clear that she didn’t think that Rett syndrome was something important to share about herself. It wasn’t really who she was, or what she did, or even what she wanted to have.

For her assignment in Health Career class, Ro had to design a poster depicting the occupations that she was interested in pursu- ing. We had never asked her that question. The family cut out pic- tures and words for 15 minutes each night for a week, and one member would ask, “Do you want this on your poster?”

From My Friend, Ro Vargo

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Ro would respond, “Yes” or “No.” At the end of the week, the final product was amazing. It was full of the faces of people. Ro wanted to work with people. There were no inanimate objects or sports memorabilia. It was as if Ro knew her limitations, but she also knew her strengths. Inclusive education classes were challenging Ro in every way and giving rise to a louder and louder voice.

The voice of Ro’s peers was also becoming clearer and louder. While on the zoology trip to New York City, Ro and her dad struggled for three days to keep up with the fast pace of a very busy itinerary. Ro’s classmates seemed oblivious to her tiring easily and to the loco- motion problems that caused her to lag behind. It appeared that they hardly noticed her at all that weekend—at least that was Joe’s obser- vation. Ro still enjoyed the trip, and it was a wonderful bonding expe- rience for her and dad.

Months later, we came to understand the ramifications and the benefits of Ro’s participation in that trip. Students in the class began to vocalize, without our knowledge, concerns about Ro’s support person in school. They complained to their teacher at first about how they thought the teaching assistant was disre- spectful to Ro. When the teacher heard their complaints, she noti- fied the principal. When there was no action, kids went to their parents and parents came to us. When the school administration failed to act, Ro’s peers did!

The vision for inclusive education was a reality. We had hoped that the kids who sat in class with Ro would not seek to harm her now or in the days to come. We had hoped that they would protect her and take care of her, seek the social and legislative reforms to support the inclusive lifestyle that she had grown accustomed to, and gladly be her neighbors and her friends because they had shared the same space, the same hopes, and the same dreams. Ro and her peers in an inclusive high school setting were already living out the dream, and there was no going back for any of us.

After Ro’s third year in high school, the frustration and outbursts returned. Ro was clearly envious of the planning and choices that her sister Josie was engaging in. College visits, college applications, and senior pictures were taking place. We were unclear about what Ro’s choices could be, and she communicated that the situation was not fair.

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One night I read about an inclusive college setting in Kentucky. Perfect? Students naturally seek postsecondary opportunities. Why not Ro? The ONCAMPUS program had been initiated as a collabora- tive effort between the Inclusive Elementary and Special Education Program of Syracuse University (SU) and the Syracuse City School Dis- trict. It was developed to enhance SU’s teacher preparation program and the school district’s inclusive schooling options. ONCAMPUS brought six high school students ages 19–21 with moderate to severe disabilities to the SU campus where they would participate with other SU students in academic, social, vocational, recreational, and service learning experiences.

Ro’s behavior improved immensely. She actively communi- cated her absolute delight with her peers that she was going to attend SU next year. She decided which courses to take, what clubs to belong to, and where she would eat lunch.

However, getting a handicapped parking permit proved to be no easy task. After much discussion and hassle, Ro was secured her permit. When I picked it up, the receptionist asked, “Oh, is this for Ro Vargo who went to Henninger High School?”

“Yes,” I replied. “Tell her I said ‘Hi.’” “You know Ro?” I asked. “Yeah, I graduated with her from Henninger last year.” Inclusive education . . . another voice heard and in all the right

places . . . another confirmation.

Syracuse University Students

Jacqueline was a sophomore at SU in the School of Social Work. She began to spend time with Ro on campus through her job as a residen- tial habilitation counselor. She shared with Ro the names of all the good professors and the courses she should pass up! Jackie was the voice of experience. As a sophomore in the visual and performing arts program, Jackie was a member of SU’s jazz and pep band, as well as the dance band. She would clue Ro in on any musical perfor- mances on campus.

From My Friend, Ro Vargo

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Before traveling abroad to study, Ashley spent every Tuesday with Ro for six months, just eating or hanging out. Katie was an SU cheerleader who picked up Ro and took her to class when her day- habilitation person went on vacation. Colleen celebrated Ro’s 21st birthday with her on a bar-hopping adventure in a 16-passenger limo!

Justine had seen Ro on campus and had thought to herself, “Boy,

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