By Rosangela Berman Bieler
President, Inter-American Institute on Disability (IID)
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 Centre 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. I met my husband at the University and studied with him for 4 years. Our daughter Mel was born in 1986 and is now a beautiful 13-year-old girl.
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. For example, I was the one who provided information to my gynaecologist on spinal cord injury issues, such as how my urinary, circulatory and other physiological systems functioned. The gynaecologists and obstetricians didn’t know much about disability and pregnancy and were not used to dealing with it.
At the beginning of my pregnancy, we had a chance to visit a prestigious rehabilitation centre for Spinal Cord Injuries in Stoke Mandeville, England. I had heard that Dr. Gutmann, the founder of that Centre, after World War II had conducted some research on maternity and women with disabilities. We brought to Brazil selected texts and translated them into Portuguese to study with my doctor, who happened to be a woman. My husband and I decided to do our part to keep the situation under control, partly because of how much “panic” we felt from our doctor, who ended up becoming a close friend of ours. To her “despair”, I developed all the conditions that can happen to a quadriplegic in that situation and that she didn’t know about such as chronic urinary infection, strong anaemia and so on.
However, I have friends with spinal cord injuries that had problem-free pregnancies after their injuries. One of them had three children within a five year period. During pregnancy even her chronic urinary infection disappeared and she always felt in great shape.
Had we planned to have a baby, maybe I could have avoided some of the problems that we faced. 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. On a trip to Europe, disabled women 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 the doctors there were very controlling and that disabled women were even discouraged by their doctors towards maternity. We can assume this happened because of the lack of information and prejudice of those doctors, not on the basis of actual medical risk.
While in Europe, I also was told by a quadriplegic 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. Finally, after years fighting with the system, they adopted a baby-girl from Latin America and are a very happy family now.
A Brazilian friend of mine who had post-polio syndrome and was pregnant, was told by her doctor that in order for her not to take any risks she should have a caesarean delivery and have her tubes tied right away in order to avoid new pregnancies.
However she started feeling contractions unexpectedly, got to the emergency department of the public hospital, had natural delivery and did not have her tubes tied. Afterwards she had two more children by natural delivery and adopted two other. This same woman always tells a funny story that took place when she was close to having her third child: she was on crutches, already far into her pregnancy and as she was taking a cab, the driver looked at her, literally shocked and said out loud: “My God! Who was the crook who had the nerve to do this to you!?!”
Attitudes and Stigma
All over the world, women with disabilities have to struggle against society’s unawareness and stigmas such as:
- disabled women don’t have sexual desires
- disabled women are not capable of having sexual relationships
- disabled women can’t generate children, at least not healthy ones
- disabled women are sick, fragile and should not expose themselves or take risks with pregnancy
- disabled women cannot raise children by themselves
We have to struggle in our daily lives to make society realise that we are women with the same instincts and rights as others. We also have to constantly educate the doctors who should be our allies and unfortunately sometimes happen to be our strongest obstacle in the process of the development of social awareness and inclusion in society.
Acknowledging that in some cases women have real health or life risks when getting pregnant, unfortunately in many situations they are actually facing discrimination and lack of information from doctors and society.
Regarding doctors, this probably still happens because of the outdated mentality of some schools of medicine that still generate graduates encouraged to consider their clients as fragile patients, completely dependent on their knowledge to survive.
Therefore, people with permanent disabilities are rarely treated as people who simply are in a different situation, retaining their rights, their physical, social and sexual integrity. Instead, they are viewed as permanently sick and incapable of making their own decisions and leading their own lives.
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 fulfil 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.
Well, now that she is almost a teenager, I am really happy with the results. 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:
“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’t 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 humour 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.”
Analogy with Working Mothers
In many aspects, when she was little, my daughter 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.
Rights and Responsibilities
Disabled women or even women who cannot dedicate a long amount of their daily hours to their child 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 got to this situation with their babies and also 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, and evaluate when it is a medical risk. Don’t leave this decision for somebody else to make or for society to judge. Take for yourself the very enjoyable responsibility of exercising all of your human and social roles.