From Seda with love... Longing for individuality within society

This last year has been one in which Seda has found not only a family, but also a way to express her individuality. Her story is that of a remarkable and brave young lady



ISTANBUL — Let me tell you a story about four sisters.These sisters live together in a house. They do their homework, tidy their rooms, go to school, bake cookies; they bicker, they tease and they laugh about silly things no one else would find funny. So what?What is so unusual about this? All four sisters are physically disabled. Oh, I hear you think, how unfortunate. But wait. I said that they were sisters, but in fact they are not related. These four girls are wards of the state. They were institutionalized when young and grew up in the institution, with no outside life. But then along came an NGO, Elin Elimde (Your Hand in Mine), which thought that these children/ young adults needed to move out of the institution into society. In Turkey, where not so long ago disability was widely perceived as a social stigma, this was a brave and innovative approach.Elin Elimde rented a three bedroom house; this was to become the Ali Çebi Umutevi (Hope House).They painted the walls, purchased furniture and appliances and with the necessary permission moved the girls into this house. It was at this moment that the girls became sisters and the women from Elin Elimde became their mothers. The girls will be the first to tell you that it was amazing for them to walk on a carpet, to own a refrigerator, even a door key.Their rooms are like any young teenager…posters, stuffed animals, frilly bedspreads...I would like to tell you more about one of these sisters - Seda. Seda is 23 years old and has cerebral palsy; she has difficulty walking and talking, but cognitively is as healthy as you or me. Seda's story hits a poignant note for me. When I was 10 a neighbor gave me the book "From Karen with Love." I am not sure why she thought I would enjoy a book about a young girl's struggle with cerebral palsy. However, she was not wrong; this book had a great impact on me. I started reading the book because of the huge black dog sitting next to a little girl on the cover. But as I read, I forgot that I was looking for a story about a dog, and became enthralled in the narrative.The story is written by the mother of "Karen," a girl born with cerebral palsy. I had no idea what cerebral palsy was; however, I was soon enthralled by the story of a brave girl striving to lead as "normal" a life as possible.She was surrounded by a loving and supportive family who helped her with every hurdle. I cried as she struggled with the great pain, and cheered when she took her first steps. I worried as she prepared for exams, trying so hard just to hold a pen. It was a simple book, but it moved and inspired me.I never forgot the determination of Karen, or the dedication of her family. Always in the back of my mind was the story of a young girl striving to overcome great hurdles. A year ago I was fortunate enough to meet Seda. I didn't think about Karen or the book when I first met Seda. Rather, I was so blown away by her maturity, by her determination, by her ability to make fun of herself (when she can't get the words out, she mocks herself lightly, saying "Come on Seda, you can do it"). At that time, Seda's greatest goal was to get into university. My husband, at that time proctor of a large state university, was very moved by her ambition. He took the university rosette out of his button hole, stood up and pinned it on Seda. "I expect to see you at our university next year." Seda's eyes, brimming with tears, were enough.Needless to say, there wasn't a dry eye in the house.I had the opportunity yesterday, on Children's Day, to visit Seda again. She recently entered the university exams and did well enough to enroll in a degree-course in sociology.Seda represents the spirit of Karen. A girl, diagnosed as a "cripple" and as an outcast of society, struggled against the obstacles presented by her disease and by society. Seda is achieving her goals and exploring her potential.Yesterday I congratulated her, and asked her: "So what next?" "After I finish my sociology degree I'm going to do another degree in journalism."Unlike Karen, Seda grew up without a family.Seda's family was unable to provide the care she needed, and she became institutionalized, living among other children, but with a loneliness that she has only recently learned to express.Last year Seda was fortunate enough to move into this house, now supported by the Ministry for Family and Social Policies. Seda can best express how important this change was for her. "When I was in the institution I stayed in my room. If I left, it was to meet with the other children in the main hall. There the director would come and say "How are you?" addressing all of us. But here, when he comes to the house, he says "How are you, Seda?" Here I am an individual, not just one of a crowd. Here I am important."This is a sentiment I am sure everyone can understand.Seda wants to be recognized as an individual with special needs and interest. Seda wants her voice to be heard. She is bright and has many things to say about her life and her situation. She can make people laugh, and she can move people to tears.But Seda's desire to be individual is not the same as the desire for individuality that many people her age express. It is not a desire to stand out from the crowd, to be different or to make demands. Seda is not a reflection of the "Me" Generation. She wants to be an individual within a community. For Seda, moving into this house meant moving into a family, a community; it meant having neighbors who would knock on the door with hot pies. It meant being connected to other people in a web of relationships.The neighbors not only come by with pies and cakes; they ask Seda to babysit their primary school children. Seda helps the children with their homework and she is thrilled that she can be responsible for someone else. If you had asked Seda a year ago if she could care for herself, she would have been unsure how to answer. Now she is caring for others. "Here I have learned what I can achieve; I have also learned to push my limits further."Surely this should be our aim when we are trying to express our individualism; to be unique while still being a functioning member of a greater society.Our individualism should be combined with understanding and respect for the needs and demands of those around us while standing up for our rights.Seda offers an important lesson to all of us. With love from Seda….and with much love to you dear Seda. You are unique and unforgettable and you have made the lives of all those who come into contact with you immeasurably richer. Go Girl!