My seven-month-old daughter was lying in the street. I was horrified! She, her then three-year-old brother, and I were returning from grocery shopping. The kids were traveling in the wagon that we often used for such outings. I was crossing the street when the wagon hit the curb and out fell Susan. I found my daughter, picked her up, and, with the help of a passerby, got back on the sidewalk and headed home. I was very shaken but also relieved. The street we crossed was busy and the incident could have been a tragedy.
This story serves as a good metaphor for the unusual challenges I face as a blind parent. Not being able to see the sloped curb and assess how I could safely get the wagon up to the sidewalk left my children in a perilous situation. Though my decision to use the wagon was well considered, it was very unwise. Blindness has had a profound effect on so many areas of my life, from the mundane--such as doing my share of household chores--to the more infinite: how I father my children.
I was born with congenital glaucoma, a very rare form of the disease. Despite my limited sight, I could still see colors, shapes, and forms at a close distance. Gradually, my sight got worse. When we moved to Edina in 1964, my parents insisted on keeping me in the public school system rather than send me to the State School for the Blind in Faribault. I will forever be grateful to my parents for this wise decision and for having the courage to stand up to the school board. Nevertheless, special accommodations had to be made. I learned to read printed books with extra-large print, and in fifth grade, I began to learn Braille and use audiotape. Two years later I took a course in orientation and mobility and started using a white cane. These changes in my education were preparations for the day my parents and I knew would come, the day I would lose my sight.
It happened on July 12, 1973. A friend and I were roughhousing and I was accidentally struck in the head, shattering my optic nerve. From that day until the present, I discovered, like it or not, that I'm committed to a life of adaptation.
In 1993, Elizabeth and I were married and soon began working out the division of labor in our new home. Although I did try new tasks, like painting the back stairwell (trust me, it was pretty humorous), I tended to stick to the things I did best, like washing dishes, laundry, sweeping, and mopping. Any additional work I could do usually took an inordinate amount of time. For me to install shelves would take many weeks (I'd have to get a ride from Metro Mobility to the nearest hardware store, find someone to help me buy the right equipment, send off the instruction to be translated into Braille or put on tape--which would take several weeks--and finally, have someone label the parts. Then, maybe, I could assemble the shelves). For my wife, putting the shelves together might take a couple of hours, and it's for this reason she does most of the domestic chores. I have, however, come up with creative adaptations. Obviously I cannot drive (I would get what my brother calls a DWB, or Driving While Blind), but I can shovel the driveway. Taking my son to preschool would be a logistical nightmare, but I can ask him to help me sort the laundry. Reading a recipe is impossible, but I can set the table and take care of meal clean up. Even in the face of these challenges, the most difficult obstacles I face are social attitudes about blindness. These attitudes are incomprehensible and I'm perplexed and angry when confronted with them.
Shortly after we were married, my wife and I got the delightful news that we were going to have a baby. It was then that we discovered a quiet prejudice against parents who have disabilities. "We don't have any aids for blind parents because we've never had any blind parents come in here," said the manager of a store that sells adaptive equipment. When my wife read What to Expect When You're Expecting, she discovered that the section on disabilities was directed toward disabled children. She could not find a word about the possibility that the parent would be disabled. The Internet, with all its vast information, has almost nothing for disabled parents. The same was true when we contacted the National Library for the Blind. Our Lamaze instructor, as kind and competent as she was, was challenged by my tactile learning style and worked very hard to make the classes profitable for me as well. Our search for information was at times discouraging, but we knew early on that we would learn how to parent from experience.
My training as a father began the day after our son, Joseph, was born. Not intimidated by my blindness, the nurses showed me how to swaddle and diaper him. I got a lot of practice when we got home and pretty soon I was calling myself the "resident diaperologist." When Joseph was four months old, my wife went back to work and I took care of him during the day. Not having anyone to rely on, I had to think of creative solutions to my childcare difficulties.
When Joseph became too big for a high chair, I had to figure out a new way to feed him. The tricky part was trying to hold him on one knee and scoop the food onto the spoon and put it in his mouth with my free hand. Since my left hand was holding him, I didn't have a way to guide the spoon. It was a messy undertaking. The solution was simple: I'd sit him down on a chair by himself: that way I could use both hands. I'd put a small amount of food on one finger and use that finger to find his mouth. A little unconventional, perhaps, but it worked. At eight months Joseph began to crawl, so a new phase of raising my beautiful son began. Since he had great mobility and got into everything, I learned to listen to the silences and check on him frequently. When Joseph's sister Susan was born sixteen months ago, the challenges and responsibilities grew more numerous and complex.
Joseph is now four and he's beginning to understand that Daddy's eyes don't work, but not once has he indicated any shame or regret that he has a daddy who's different. He's a helpful little guy, but one thing we talked about before our children were born was our concern that they not feel like they have to be little servants to me. To that end, I maintain my independence and don't ask Joseph to do things I can do for myself. I'm comforted by the fact that I feel up to the task of being an effective, caring parent, and I love spending time with my children.
But there is one problem over which I have no control: whenever my wife, children, and I go out, we are stared at like we just beamed down from Mars. Recently, when my wife and I went to a fast food restaurant, the person behind the counter stared at me long after I placed my order. When we were eating, the people sitting across the aisle could hardly take their eyes off of us. These situations make my wife especially uncomfortable, and I don't understand why we have to be the objects of so much attention. I've often asked myself why, as a blind parent, I'm so different. The unwelcome gawking at public places is certainly unfair, but I do not expect the general public to cater to my feelings. Unfortunately, people who have disabilities often put up with a lot of weird behavior. Some groups believe that those who have disabilities should automatically be treated well. Such expectations are fine and good, but not realistic. Confronting the ignorant and the fearful is the responsibility of the person with the disability. It can be unpleasant and intimidating, but it must be done.
I'm not concerned with having the right name for my disability. So much time is wasted trying to come up with the exact name for a disability in an effort to make everyone feel comfortable. I don't care if I'm called blind, nonsighted, or visually challenged, and I don't concern myself with making people feel good about disability. Disability is a fact of life and something all of us have to face at one time or another, in ourselves or others. I'm far more concerned about the attitudes that are expressed in unguarded moments, like our neighbor saying that my wife married "her burden." Statements like that are especially offensive and hurtful.
Blindness has affected me in ways I could not have anticipated before losing my sight. An example is communicating with my wife and son. Some of the worst disagreements Elizabeth and I have had were over perceived safety violations. I would notice Joseph close to something dangerous and would imagine he was in more danger than he actually was. This is one of the most frustrating aspects of being a blind parent, trying to keep my children safe from both real and imagined dangers.
Communication with Joseph has become more complicated yet more essential the older he gets. I used to ask him where he was, and he'd respond, "Here, Daddy." Now that he's four and is constantly plotting riot and mayhem on hearth and home, I must ask him more specific questions:
"Joseph, what are you doing?"
"What did you just do?"
"Joseph, what is in your hand?"
I, struggling to be nonjudgmental, yet firm, ask: "What are you doing with the eggs, honey?"
The problem is that his egg experiment happened in the living room, not in the kitchen. I tried to clean up the mess as best I could, but when my wife came home from work, she was dismayed to discover that not only were there eggs on the carpet and a chair, Joseph had nested about six eggs in a potted plant. It's called life with an adventuresome child who has a blind daddy. Fortunately, we're able to laugh over these adventures.
I have a wonderful life, very full and rich with love, work, and unusual challenges. The way I do things as a father and a husband is different from sighted men. My concerns, however, are the same as any other parent: how to raise children to love wholly and honor God; to teach them right from wrong; and to model the characteristics of service to others. No reward can match that of having your baby daughter squeal when you come into the room or hearing your four-year-old say he loves you up to the sky. I have had many jobs in my life--phone operator, telemarketer, and, more recently, parent educator--but none have rivaled the importance of loving my children and preparing them for a life of happy, productive independence.
James Shaw lives in Minneapolis with his wife and their two children. This is his first contribution to Minnesota Parent.
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