December 15, 2009

The last day of working at Riverside was an emotional and reflective day for all of the volunteers. It is sad and strange to have formed such close ties to the students and teachers with a small chance of retaining contact with them. It is difficult to choose where to begin in this final blog, but I would mainly like to discuss my changing perception of disability after this semester.

Charlie, a member of my church, is my earliest memory of disability. I know now that Charlie has Down syndrome; at the age of ten or so, I had perceived him to be good natured and simply different from the other adults. An involved member of the St. Ann community, he always took up the collection at the 11:30 mass and often attended daily mass as well. I asked my mom about him once – who was he? Did he have a family? Why did he talk, walk, look the way he did? My mom carefully explained that he had something called Down syndrome; he wasn’t able to learn as easily as other adults, and had many health complications. Charlie was in his late forties at the time and my mom told me it was a blessing he was still alive with all the complications that come with Down syndrome. I remember thinking of Down syndrome as a horrible “disease,” not knowing exactly what kind of health complications he had – but assuming that any person with Down Syndrome was marked for an early death. Charlie is still alive, well, and active as always at the church.

Another early experience I had came around the age of fourteen. My neighbor Meg’s son Peter had just started preschool, but was having some issues in the classroom. Peter was and still is incredibly bright for his age. He liked to memorize certain facts and figures when he was little – types of dinosaurs, types of cars, state capitals, for example. He was into the things that most little boys were interested in, and his mind and memory were sharp enough to retain incredible amounts of information at such a young age. Peter was the oldest in his family, and thus, I believe, a little unused to the classroom structure in which he had to share time with the teacher, share toys, and follow a schedule. The teacher immediately noticed both Peter’s brightness and his stubbornness and called to schedule a meeting with Meg. She recommended that Meg take Peter to see a specialist because she thought she was detecting signs of autism. Meg was mortified – she didn’t understand autism, but she knew it to be undesirable. She thought the preschool teacher was completely unqualified to make such a suggestion. She knew that Peter was simply smart and nothing was “wrong” with him. I’m not sure if Peter was ever professionally assessed, but he is eleven now, fully-functioning and still at the top of his class.

Finally, in high school I had a classmate with autism – Vicky. Vicky joined the class our junior year, so she was both socially unfamiliar to us and, by speech, affect, and abilities “different.” I went to a private, college-preparatory high school, known for its stringent academic standards. The students in my class knew, mostly by word of mouth, that Vicky had autism, but I wouldn’t say that any of us knew what that really meant. We figured that autism was equivalent to severe learning disabilities – and we wondered how she would fare in the same challenging classes we had to take. The girls in the class wanted to be nice and reach out to Vicky, but often we would not know exactly how. What would we say to her? Why did she seem to want to avoid us? Many of the girls who tried to reach out to Vicky were hurt by her social rejection. I would often hear people say, “I was just trying to be nice to her – she won’t even talk to me,” or, “It’s sad that she doesn’t have many close friends, but she is so unfriendly; how are we supposed to get to know her?” It saddens me to say that Vicky made very few friends, and likely no close friends. She was the only person in our class with a disability. She was incredibly smart and was therefore resented for being given extra time with teachers, exams, and assignments. None of us knew how to deal with difference, with disability, or with special education.

I have made incredible personal progress in my perception of disability. I no longer think of Down syndrome as a “disease” that marks someone for an early death. I can look retrospectively on Meg’s reactions to Peter’s teacher and understand the pain and the denial that a parent goes through upon learning of potential disability in her child. I also am thankful that Peter never actually was diagnosed because I know that Meg would have been devastated, though news of autism should not be received with such embarrassment. I feel most improvement, however, in my personal treatment of individuals with disability. If I were to return to high school, I would encourage people to actually learn about autism and Vicky’s daily challenges, instead of passing judgments like, “She has no friends because she herself is unfriendly.” I would have tried to interact more with Vicky and would not have been discouraged by her immediate hesitation.

David’s class at Riverside and the following lectures taught me lessons in community, communication, method, persistence, and the various directions of perception. The issue of community is expressed in my earliest blogs. I loved that the class circled up at the end of the day, simply to share, summarize, and discuss. I saw that the students really loved each other and the teachers and assistants. Some pupils have better verbal abilities than others, but nevertheless, everyone was given equal attention in the circle. Communication is a key lesson from what I observed in the 6th Form community, and communication definitely expanded from merely spoken word. I slowly learned how best to interact with semi-verbal individuals like Aroosa and Archie, and nonverbal pupils, namely, Maleika. I learned the persistence I lacked in high school in regards to communication and gaining trust of the pupils. Maleika is the most prevalent example of my persistence. Hardly acknowledging me the first couple of sessions, she now heads straight for me when I walk into the classroom. She takes my hand and hardly lets go until buses arrive.

One of the most poignant lessons at Riverside was mothers’ perception of their children’s disabilities. I think this particular lecture will stay with me for a long time. The mothers graciously shared each fear and apprehension, the different stages involved in raising a child with disability, and the various daily challenges, including sibling rivalry, government funding, mainstream v. special education, etc. I thought of Meg and Peter during this lecture and could imagine the emotions these mothers had experienced. Their firsthand testimonials helped me to expand my perception of disability immensely. If I pursue a career in which I will interact with children with special educational needs, I have an incredibly valuable basis of understanding after being present for that lecture.

I would recommend this or similar experiences to anyone – thank you for reading!