By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
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.