Future Reflections Convention Issue 2013
by Adrienne Asch
From the Editor: Adrienne Asch holds a PhD in social psychology and has written extensively on issues in the field of bioethics. She directs the Center for Ethics at Yeshiva University in New York City. Below is an address she delivered at the 2013 NOPBC board meeting.
It is truly a pleasure to be here! I want to thank Carol Castellano for inviting me to speak.
I'd like to talk about some things I learned growing up. Hearing about the gifts my father gave me may be useful to you as parents. My father died twenty-five years ago, and I'm old enough to be the mother of all of the parents here--it was a long time ago that I was a little girl. But I think that some of what my father gave me can apply to any parent of any child, blind or sighted, and certainly any blind child.
I'm probably more a proponent than many people here of nonsexist child-rearing. I'm not necessarily saying that only fathers can do this! It happens to be the case that my particular father did these particular things. Can mothers do it? I'm sure they can. In my case, though, it was my father who taught me these lessons. Of course, if my father were here, the first thing he would say is, "Why aren't you talking about your mother?" He did not choose to take the credit for any positive impact he had.
What do I want to tell you about him and what I think helped me? I think my father approached life, and child-rearing, as an adventure. Sometimes it drove my mother crazy. My mother used to like to plan things, and my father used to like to just show up. Mom would say, "Maybe we should make a hotel reservation," and Dad would say, "Ah, why bother? We'll get there!" I think the adventurous spirit he had about life was a gift for me in his approach to me as a child who was blind. I was blind from infancy due to retinopathy of prematurity. My parents found out that I was blind when I was six or seven months old. They were told that premature children develop very differently from children who are full-term, so they didn't know what to expect. Aside from that, I was their first child, so they didn't have much experience with kids anyway. They didn't know what they were in for in having children, much less having a blind child.
My father started out by calling someone he had heard of whom he thought might be a useful resource. But when he met this guy, who was a blind rehabilitation counselor, he decided he was a creep. He was a nasty character who had low expectations of himself and of everybody else. My father decided we could just forget about that! Instead, he decided to follow his own intuition.
During my first years my family lived in New York City. I remember going to the Lighthouse nursery school, which was a special program for kids who were blind, and I went to a sleepaway camp. Then my parents heard about the New Jersey Commission for the Blind. I realize that things have changed now, but back then, in what some of us think of as the glory days, New Jersey had quite a remarkable program for blind children. The creator of that program, Josephine Taylor, really believed that blind children could go to public schools and function fully, having their books in Braille and getting some help from itinerant teachers. This was in the 1940s and 1950s. No one had heard of mainstreaming or inclusion or IDEA (the Individuals with Disabilities Education Act), but New Jersey did it. They didn't do it perfectly, but they did it pretty well. No, I didn't get all my books on time! Yes, there were moments when my parents ended up making geometry diagrams for me with a tracing wheel. Nonetheless, I got most of my books when I needed them, and I learned to type my assignments so I could hand them in to my teachers.
I started attending my neighborhood public school in fourth grade. I made friends in the neighborhood. I went to Brownies and later to Girl Scouts. It was very important for me to have those experiences. Of course there were bumps. There were times when I was excluded, times when I ran into ridiculous overprotectiveness. But I got great opportunities to learn how to make my way in the world.
I remember coming home in fifth grade and saying, "I really feel as though I don't have the kind of friends that I want. Nobody invites me to go to things with them."
"Well," my father said, "if nobody's inviting you, invite them. Who do you like? Who do you want to get to know?" He said, "To make friends everybody has to go more than halfway. You have to go more than halfway to make friends."
He may have said, "You have to go more than halfway to make friends," partly because I was blind. Blindness was a barrier that he knew I had to break down to connect with other people. But going more than halfway was how he approached life. If you asked my siblings, they would tell you the same thing--they all felt that they had to go more than halfway, and they're not blind. They don't have any explainable disabilities. [Laughter.]
I think it was a very good lesson. I started inviting people to do things. I started taking a lot of leadership. That initiative, whether it was to start a debate club in high school or put on a play or create a choir and orchestra that a bunch of us ran in the summer by ourselves, all of that gave me incredible opportunities to do things, to be active. None of that would have happened without that simple advice: "Go do things! Don't wait!"
Similarly, I remember coming home from sixth grade (which was my least favorite year of my life!) and saying to my father, "I feel as though I have thirty-three guides and no friends." I didn't have an aide leading me from class to class. I had kids helping me find a seat, which I didn't want from them, but I couldn't get them to play with me. It was horrible! My father said, "You know, you're a very good child. Maybe you should go up the down staircase now and then." I had just been told by the greatest authority in my life to break the rules! I had permission to break the rules, so I broke a few. [Laughter.]
A couple of years later I started high school. We had four minutes to get from class to class. I wasn't seeing the people I knew in seventh and eighth grade because they were in different classes. I remember saying to my father, "What happened to all the friends I made? I never see them now!"
"What's probably happening," my father said, "is they're smiling and waving to people across the hall. They're catching their friends' eyes as they run through the halls. They can't catch your eye, and you don't see them smile or wave at you. I understand why you think they're not your friends anymore, but I think they just haven't figured out a way to solve this problem."
Was that true? I don't know for sure. But I thought it was a great way for him to help me see my friends' situation and at the same time recognize my distress. It helped me say to myself, “All right, if they're not smiling and waving at me, don't give up. Call them and invite them to something. They're probably still my friends. They were my friends last year, and they'll be my friends this year.”
Another instance that comes to mind happened when I was eight. I got a pogo stick. Does anyone remember pogo sticks? [Laughter] I was happily playing with my pogo stick in our long driveway, and my father said, "I think I should put a bump at the end of the driveway so you know not to go in the street." Then he noticed that I could tell where the end of the driveway was because there were various trees along the side. He didn't have to put a bump at the end of the drive. One of the things he said about that incident was that he tried to keep focused on learning from me as well as teaching me. I knew more about how to do certain things and what cues I used to do certain things than he did. He learned from that, and I think that was also part of his approach toward life as an adventure--being curious and not having to have the right answers all of the time.
My father didn't have the NFB. He didn't know a lot of blind people, and most of the ones he met he didn't particularly like or respect. He was perfectly happy to meet them, but he didn't like the ones he met. He didn't want me to be like them because he didn't think they were nice people. His goal for me was that I would become the kind of person he wanted all of his children to be. I think that goal was not much modified by blindness.
I've heard people say, "My parents had high expectations for me, but I could never discuss blindness because it was not allowed." In my family that was not the case. I talked about blindness plenty when I thought there was something to talk about. One day when I was in high school, a guidance counselor told me I couldn't take an advanced summer-school course because I shouldn't inflict myself on the new professor. [Laughter] I went home and said, "What in heaven's name is this person saying?" There were some very angry calls to that guidance counselor, and I did take the course!
Similarly, I auditioned for the All-State Chorus in New Jersey during high school, and I got in. There were two of us who were blind that year. We were supposed to go on tour, and the All-State Chorus didn't want either of us to go; they thought we would die or something in Atlantic City. My parents and the New Jersey Commission for the Blind and the All-State Chorus had various meetings, and my parents finally signed some agreement that I'm sure they should never have had to sign, saying they wouldn't blame the All-State Chorus if anything terrible happened to me.
As I was getting onto the bus at four-thirty in the morning to go off to this event in Atlantic City, my father called out, "Adrienne, do you think you could go through a plate-glass window?" [Laughter] I'm sure my friends didn't have a clue what that was about! I loved it!
Like most children, looking back, I have to say that I never thanked my father for a lot of the things he did--for schlepping hundreds of pounds of stuff from home to school when I went to college, including a tandem bicycle and Braillewriter and books, not to mention a few friends here and there. He did all those things that parents do for kids and that kids take for granted.
One other interesting example I'd like to share with you, and then I'll stop. When I was in college I was still living in New Jersey during the summer and taking the bus into New York to visit my friends a lot. Then I would take the last bus back, arriving very late at night. My father would pick me up at the bus at one or two in the morning. In what I suppose was a rare moment of consideration, I said, "Dad, it's really very nice of you to do this."
He said, "Adrienne, if you could drive, you would leave the car here at the bus station and take the bus, and then you'd drive home at night. But you can't leave the car here. I want you to have the chance to do the things that you want to do. At some point you'll get an apartment in New York, but right now you're living at home. I can do this. It's all right." His matter-of-factness, his pleasure in wanting me to have the opportunities I would have had as a teenager who could drive, his sense that having friends and having a life and making my way were as important to me as they were to any other child, was an enormous gift.
If someone had asked my father if he would like me to be able to see, he might have said yes. He might have said, "Sure--I think certain things would be easier." But he didn't need for me to be able to see in order for his life to be all right. There were actually a lot of things about me that he wanted to change much more than my blindness! [Laughter] But as far as my blindness was concerned, I was okay. And that's pretty good!