"My children don’t have to compensate for my disability"
"My children don’t have to compensate for my disability"
Lydia Zoubek is 49 years old, of Arab descent and the mother of two children. While both she and her husband are blind, her children are able to see. To increase the awareness of the everyday lives of blind parents, she writes about this issue on her blog.
REHACARE.com talked to her about the things she had to learn as a mother and asked about the aspects that were important for her right from the start when it came to raising her children.
Ms. Zoubek, what were you concerned about prior to and during both of your pregnancies?
Lydia Zoubek: When a woman is pregnant, people always say, "It doesn’t matter whether it’s a boy or girl as long as it’s healthy." That was basically also my sentiment but I didn’t seek genetic counseling. I also wasn’t worried whether my children might have a disability or not. I did the usual prenatal care tests and even took a high-resolution ultrasound. That’s how I found out that my first child is a girl. However, I didn’t have an amniocentesis or similar test done because I would not have considered an abortion had a disability been detected at that point. Both of my kids were planned children. It didn’t matter whether they might have a physical disability or Down syndrome – the only implication for me would have been that the knowledge would have enabled me to prepare for any respective condition. For me, a child with a disability is worth just as much as a healthy child.
How well were you able to cope after giving birth?
Zoubek: Obviously, I had to learn many things. How do I change a baby? How do I dress it properly? How do I bathe my baby? The hospital staff had some issues showing me things correctly but I had an amazing midwife post-delivery who assured me that we would be able to handle it all together once I was home. And that’s exactly how it was: little by little, she taught me everything and I never felt overwhelmed.
Did your midwife have any prior experience with blind mothers?
Zoubek: No. When we met, the midwife said, "Well, we get to learn things from each other. I will learn how a person with a visual impairment handles life – and you will learn how to take care of your baby." We simply tried things out together. And she was so amazing, I insisted on having her by my side again with my second child.
What were some of the reactions you encountered during both of your pregnancies?
Zoubek: I had a wonderful gynecologist who said, "You are pregnant. Many people will tell you what to do and what not to do and what’s wrong or right. But if you seriously have any questions, please come and see us before you try out things people tell you to do." The female gynecologist of the group practice also said: "Why wouldn’t you have a child as a blind woman?" Plus, I was not her first blind patient. She believes what matters most is technology and a great attitude.
Having said that, some acquaintances didn’t understand and wondered, "Why would a blind person have a child?!" They usually added, "But your husband is able to see, right?" Or people asked whether my parents would help me after the birth or whether I had a helper. But you have to let go of these thoughts and surround yourself with people that are good for you and go on this journey with you and offer their help. Communication at eye level was very important to me. For instance, I have two sighted girlfriends, whose children are the same age as mine. We supported and encouraged each other.
And probably also compared notes?
Zoubek: Yes we did. For example, I was able to ask them whether they can show me how to use a baby sling carrier, so I am not totally ignorant about it once the baby is born. Once the time had come, I was able to use the baby sling carrier properly: I had my child on my tummy and my hands free – one to use for my white cane and the other one to carry items or to feel for things. My girlfriends’ suggestions had paid off immediately.
Since Lydia Zoubek and her husband don't drive a car, many things often have to be organized differently. Public transport is often helpful here.
What were some of the reactions after you gave birth?
Zoubek: A stranger on the street once told my then two-year-old daughter: "That’s so nice that you take care of your mother." That made me chuckle. After all, regardless of whether you are blind or not, you probably wouldn’t trust a two-year-old to guide you through traffic. Unfortunately, people create an artificial need for care and correlation that isn’t actually necessary. After all, my children grow up like normal children do. That was always very important to me. My children don’t have to compensate for my disability!
How would you describe your daily life as a mother?
Zoubek: My everyday life is essentially not much different from the life of sighted parents. I have the same typical discussions about homework or making my kids clean up their rooms.
I once wrote an article about whether my children exploit my disability in everyday life – because that is one of the questions people often ask me. And my answer is definitely NO! What’s really happening is that smart children tend to look for solutions. Most children do. I believe that if a child wants something, it tries to figure out how to get it. Maybe it helps if some parents are slightly forgetful. For me, it’s my visual impairment. If my children put twice as many slices of their favorite lunch meat on their sandwich, that’s fine with me. I can totally live with that (laughs).
How does your disability actually impact your life with kids?
Zoubek: Both my husband and I are unable to drive a car. Obviously, that’s sometimes an issue. My son has played soccer for many years. He trained during the week and had games on the weekends. You need to come up with smart solutions, especially when there is sometimes not enough time to take public transportation to a destination. But oftentimes, we were able to make arrangements with other parents.
And if everything else failed, I paid someone to help. But it’s obviously not always easy to have the extra money for that. I never qualified for parenting assistance as such. My visual impairment wasn’t enough to be eligible. So when I needed someone to practice reading my child because I am unable to see whether my child is just guessing the words, has simply memorized them or has difficulties with some words, I have to figure out how to get help. I usually paid someone to do these things for me.
You also give a voice to parents with disabilities and broach the subject on your blog. Why is that so important to you?
Zoubek: This subject still doesn’t get the kind of media attention it deserves and when it occasionally does, it tends to be a very one-sided representation. In these depictions, blind parents are often dependent on support services – or they are superheroes. Meanwhile, there are all kinds of different facets in between these extremes.
I would like to raise awareness of what it actually means to be a blind parent. That is to say, illustrating the challenges parents face in addition to those things mothers without disabilities are already up against. We are parents with all kinds of different qualities, problems, and challenges that come with being a parent. And some of us simply have a disability on top of it – whether it’s of a physical nature or a sensory impairment. But all of this doesn’t matter because being blind is just one part of me. Every parent with a disability has strengths and weaknesses.