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Being a Disabled Mother: Parenting and Family Issues
Rosangela Berman-Bieler
Editor, One in Ten, Unicef/RI Newsletter


Abrstract To be a mother is a personal decision which could not be decided by other persons. A disabled woman should have the rights as other women to have a baby or not. A personal experience of being a disabled women in Brazil will be shared with other disabled women who may face the same situation in their own country.

At age 19, in 1976, in Rio de Janeiro, Brazil (where I was born), I had a car accident and became quadriplegic. A year later, I got involved in the Disability Rights Movement, advocating through a "patient's club" inside the Rehabilitation Center and from that point on, I became totally committed to the cause. Right after the accident, I decided to restart college and got my degree in social communications, majoring in advertising and journalism. There I met my husband, Michael, and we studied together for four years. We got married in 1985 and our daughter Mel is now 12 years old.

At that time in Brazil, just a few women with severe disabilities had a chance to experience maternity, at least that we got to know. Probably, many other disabled women passed through the health system to have their babies but there is no data or reports on it.

We faced a major lack of information, mainly from doctors and rehabilitation service providers. However, even with some of the tough moments during my pregnancy, I can still feel the great pleasure of having generated inside my body a being, as a result of my love towards my husband and for life itself.

I have learned from some women with disabilities that they also encountered lack of information and support for their parenthood, no matter from which culture they belong to.

For instance, on a trip to Europe, a disabled woman asked me what I had to do to have my doctor's approval for my pregnancy. I was surprised by the question and told her that I did not ask for permission to get pregnant. I just did it like everybody else. She told me doctors there were very controlling and that disabled women were even discouraged towards maternity.

While in Europe, I was also told by a quadriplegic friend who was trying with his wife to adopt a child, that they were facing all types of discrimination from the court system because of his disability. The judges argued that he could not be a good father because his wheelchair would keep the child from body contact with him, and body contact was really important for child's development!

Some time later, he and his wife visited me in Brazil and my friend kept taking photographs of my daughter sitting on my laps on the wheelchair, hugging me, etc.. Unfortunately, he was in a position where he needed to collect "proofs" for the judges of his country, that he could raise a child as everybody else.

Finally, after years fighting with the system, they adopted a baby-girl from Latin America and are a very happy family now.

My relationship with my daughter when she was born was something full of beauty and strong emotions but difficulties as well, since she was as much as a dependent being as I was, in many aspects. However, in her case I was the one who was supposed to fulfill her needs such as: giving her a bath, changing her diapers and clothes, waking up in the middle of the night when she cried, running to save her from an emergency situation, feeding her with my own hands and so on. I could not do it myself when she was a little baby.

It was a very hard experience for me because I had to share my motherhood with other people. On the other hand, we always had a very strong emotional and affectionate relationship as mother and daughter, that was and will always be irreplaceable for both of us. I have learned that being able to be operationally efficient with a child is easily replaceable.

I always tried to do as much as I could by myself and when I couldn't I would be close by or actively orienting my husband or my attendant on what and how to do it.

Actually, my husband has always been a great partner in our parenting life. He was the one who helped me and accompanied me during the long nights when Mel was a little baby and I was breast-feeding her... In all situations when my disability could have made things difficult, he was always there for us, fully exercising his role as a parent. He understands that, being a family we all depend on each other. Each one of us has weaknesses and strengths and we can find a perfect balance if we know how to share our skills.

In my opinion, interdependency is a healthy characteristics of a family life. But we also have to be careful to preserve all of our different roles: as a parent, as a wife, as an individual. For each situation, we have to exercise a specific one.

I remember when Mel was 4-5 years old and she was beginning school, her main request to me was: "Mom, I would like you to walk me to school, only both of us".

At that time, I used to have a manual wheelchair and, being a quadriplegic, I always depended on somebody else to push my chair in the streets. I realized that this was a way she found to tell me she needed more intimacy and privacy between us... She was challenging me and, at that time, I didn't have the solution for the situation.

Shortly after, I had an invitation to attend an international exchange and training on independent living, in Berkeley, CA, USA, organized by the World Institute on Disability. While in the training, I had a chance to try a power wheelchair for the first time in my life. I had not experienced that sense of freedom since I began to drive my car, a few years after my injury. Mobility does really make a big difference in terms of independence, self-confidence, self-esteem.

Well, you can image my daughter's reaction when she saw me arriving, through the airport doors, driving my chair by myself. She jumped on my laps and until today it's hard to convince her that now she is too big and heavy and I can not carry her anymore! Mel is now almost a teenager and I am really happy with the results of our relationship. I think my daughter has a healthy image of her mother, an image of a mother who is there for her, a regular mom, as everybody else's mom. Last month, in school, her English teacher asked the students to describe a person in detail. She could have picked anyone but she chose to describe me. She wrote: "Rosangela Berman-Bieler is my mom. She has dark brown hair and light brown eyes. She loves to talk to her friends and family. My mom wears glasses and always has lipstick on. She always wears earrings no matter where she is. One thing my mom has that most people don's is a wheelchair. She was in a car accident when she was nineteen. Everyone thinks it is sad but she does not care. She is happy the way she is. My mom is a very caring person. She has a good humor and loves to laugh. She is a very nice person, too. But on the other side of the story she can be a pain. She, as you probably know, is like any other mother, some times pretty nice and some times pretty mean. But of course, I love her."

For this trip to Hong Kong Mel is traveling with me, only both of us, for the first time. Now, we both can fulfill our needs without depending on others. And I am very proud of having her around because of the lovely daughter and beautiful person she is. In many aspects, when she was little, Mel had the "mother-provider" image distributed among a few close people. I don't know if this situation made her the independent person she is today or if it only reinforced her personal traits as an individual. It is likely that many children of people with severe disabilities or even of mothers who work full time, have these same characteristics.

The analogy with the working mothers might seem initially hard to perceive, but it is comparable in a lot of ways.

A woman with severe disability, who decides to have or adopt a baby, is comparable to a working woman who theoretically does not have enough quantitative time to dedicate to her child. However maternity has to be more than physical or time availability only. It is a relationship based on affection and responsibility, in which qualitative availability is what really makes a difference.

After evaluating this experience, I really believe that maternity does not only serve the purpose of generating or adopting a child but the one of raising someone towards happiness.

Disabled women or even women who cannot dedicate a long amount of their daily hours to their children should not allow others to take their role as mothers just because they believe they could not do it on their own.

I know some women with and without disabilities who went through this situation with their babies and with their own lives, thinking that since they cannot provide adequate assistance, they might as well let others make all the decisions for them.

In a paternalistic society as in Latin America, for instance, this is a very common situation among family members, and when you give away your responsibilities you are also giving away your rights. As a consequence, the child loses a mom too.

Maternity is part of being a woman. It is a combination of biological feeling, skills and talents. It is a commitment towards life and love that only women can provide to the world.

If you are a disabled woman, coming from any culture of the world, who has the desire to have or adopt a child, go ahead. It is also your own right. Of course you, as an adult and a responsible person, have to be in control of this decision. Don't leave it for someone else to decide or for society to judge. Take yourself the very enjoyable responsibility of exercising all of your human and social roles.


Mrs. Karen Ngai
Executive Editor
c/o Division of Social Studies
City University of Hong Kong
Tat Chee Avenue
Kowloon
Hong Kong
Tel: (852) 2788 8834
Fax: (852) 2788 7709
E-mail: scngai@cityu.edu.hk

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