Future Reflections Spring/Summer 2003
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Perspectives on Blindness:
Siblings Have Their Say
Taylor gives Bronwen an affectionate, sisterly hug.
A couple of issues ago, we published an announcement for the sighted brothers and sisters of blind kids. We asked kids to send us their thoughts, concerns, or observations about having a blind sibling. Of course, since sighted siblings, especially younger ones, may not read Future Reflections, we were counting on parents to read the announcement, and discuss it with their kids. Here are the responses we received:
We begin with a question-and-answer conversation piece between Nancy Tedesco of California and her six-year-old daughter, Taylor, about Taylor's four-year-old sister, Bronwen, who is blind due to Leber's congenital amaurosis. Here it is:
Bronwen and Me
Mom: How does it feel to have a blind sister?
Taylor: It feels great. Even though my sister is blind makes me a little sad, I love her very much.
Mom: Why does having her be blind make you sad?
Taylor: Because she can't see where I am. It just makes me sad.
Mom: What kind of fun things do you do with your sister?
Taylor: I hold her. We play stuffed animals together. We jump. We climb together. She copies me sometimes, which I like.
Mom: Would you do anything differently if she could see?
Taylor: We still do everything even though she is blind.
Mom: Do the kids at school ever ask annoying questions?
Taylor: Yes! Because they found out and somebody asked if I loved my sister. Of course, yes! I love my sister. That was a stupid question.
Mom: Can your sister do the same things as other kids.
Taylor: She can climb like I do. I'm very happy she can climb with me. She can run like I can. That's very well. Can I tell you a story that Mrs. Payne told me? [Mom: Okay.] One day there was a blind lady that went to a race and she won!
Mom: Why do you think Mrs. Payne told you that story?
Taylor: Because I told her my sister was blind.
Mom: And maybe she told you that story to show you that blind people can do anything anyone else can?
This next piece is from Catherine Badillo, age fourteen, from New York. Her article highlights the importance of giving sighted siblings good information about blindness and positive opportunities to meet and interact with competent, successful blind adults. The fact that Catherine's parents must have been involved in some way in encouraging her to write and send in this article indicates to me that they are actively addressing Catherine's worries. If you have a sighted teen that has not talked with you about their feelings recently, find an opportunity to bring the subject up. Sit down and read this article together, then read My Role Model (also in this issue). Listen, talk, and then listen some more. Worries such as the ones expressed in this article are too heavy for even a mature teen to bear alone. And sometimes teens don't need answers; they just need a caring adult to listen to them, to affirm the legitimacy of their feelings, and to let them know that an adult is in charge. Here is what Catherine Badillo has to say:
Always a Part of My Life
by Catherine B.
When someone asks me to describe my family, I usually answer like most people. I tell them, “I have a mom, a dad, and an older sister named Sarah.” The only difference is that my sister is blind. Sometimes, it bothers me knowing that my family and I are so different from others. When I go out with my sister, people sometimes stare like we're from another world.
Living with her is sometimes very frustrating. Such as when I try to help her, she acts like I am trying to take over her life. However, I remind myself that she will never get the same chance in the game of life as others. However, I know that I have amazing parents who have helped her succeed since day one. People can be selfish sometimes, and say that their life is so unfair. I have to admit that I am sometimes one of them. But I stop and think at the life that I lead and the life my sister is forced to lead. I think to myself, whose life is more unjust—mine or my sister's? When I am out with my sister, people not only stare, but young children ask why her eyes are so different. I try to explain to them that she was born blind, and is not able to see.
I sometimes worry about how she will turn out when she gets older. Right now she is only 16, but college is coming up soon. I worry about how she will make a living in the real world. I think about her future and what she will become. I pray that she will succeed in whatever she does.
I love my sister with all my heart, and I would do anything for her just as any other sister would. However, in my case, things are a little different. I have different concerns than other siblings would. What keeps me thinking positive is knowing that she will always be a part of my life, no matter what.
The final three pieces come from John Cucco of New Jersey. The son of Carol Castellano, vice president of the NOPBC, John's first piece was a speech he gave on a children's panel at a state convention of the NFB of New Jersey when he was six-years-old. The second piece is a transcription of a talk he gave at age fourteen to a workshop of parents at the NFB convention, and the last piece he wrote especially for this issue. Here is John Cucco:
[PHOTO/CAPTION: John Cucco at the 2001 NFB Convention.]
by John Cucco
Hi! My name is John Cucco. I am in the first grade at Kings Road School in Madison, My favorite subject is math. I like to ride my bike and go roller-blading.
As the brother of a blind child, I think it's FUN to have a sister who is blind! We play lots of games together. It's really pretty regular to have a blind sister. Come on—she's only a kid!
Because my sister is blind, I have gotten to know lots of friendly people—her Braille teacher and cane teachers and all the people in the NFB.
I think the best people to teach other about blindness are blind people! They know most about blindness because they're blind!
Can Blind People Be Helpful?
by John Cucco
John Cucco at the 2001 NFB Convention.
Hello. My name is John
Cucco and I have lived with a blind person all my life so I consider myself
an authority on the issue of whether a blind person can be helpful. However,
this is an unfair task because I am a 14-year-old boy and I don't really want
to talk about why my 17-year-old sister is so helpful. But when I actually sat
down and thought about it, I realized that Serena is often a useful person to
have around. For instance, she is really good at Spanish, so whenever I have
a question about my Spanish homework, I ask her instead of consulting a Spanish/English
dictionary. She's quicker and helps with the grammar, too. I know other kids
also find her helpful because they often call for the homework. Serena is a
good student and has a great memory, so she always knows what all her homework
is. Serena is actually also known as “the family memory.” She remembers names,
numbers, and even where the car is parked sometimes. If there's no pen or pencil
around, Serena is a critical asset to the family.
Another way Serena helps is in chores. Our parents have split up the chores and we share doing things like clearing the table and emptying the dishwasher. Although Serena is supposed to do half, sometimes she doesn't do it and sometimes my parents ask me to do things and not Serena. I realized that I in fact help Serena to learn skills for daily living when this occurs. Whenever there is a chore injustice in our house, I whine, “Mom, Serena doesn't have to do this!” To my dismay, instead of releasing me, Mom just makes Serena work, too. So Serena can do all the things I can, because I won't tolerate doing it all myself. As far as chores are concerned, blind people should definitely be equal to sighted people. Thank you.
On Having a Blind Sister
by John Cucco
For as long as I can remember, I have had a blind sister. This is not new or unusual to me; it is my reality. I suppose it is different to have a blind sibling, but I wouldn't really know. Blind or not, she's my older sister, and at least towards me she acts just like any other older sister would—bossy sometimes, argumentative; she's really a very normal sister.
There are many good sides to having a blind person in the family. A great one is a one-week vacation every year to the National Convention. I have been to Anaheim, Atlanta, Philadelphia, and Kentucky with the NFB. Over the years, I have made friends with other kids at the conventions, some blind, some who have blind siblings or parents. All of us are there because of blindness in one way or another, but blindness rarely figures into our conversations or activities. We all know blind people and grew up with blind people around, so it's just not a big deal.
I guess that there are also some down sides to having a blind sibling. Every so often I have to read something to Serena from a book or packet that she doesn't have in Braille, or wait at school while she prints out a test, but her blindness is not a big hindrance in my life.
Sometimes I wonder what it would be like if Serena had been born sighted. However, there isn't really any way to tell. I don't ever regret it, or wish that I could have a “normal” life. Her blindness has opened my mind to differences, and I have learned to cherish them. That is what it's like to have a blind sister.
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