A total of 36 women with lower limb disabilities, all of whom had suffered from poliomyelitis as children, were interviewed. The average age of the women interviewed was 36 years, with a standard deviation of 4.8 years. Nine women living with disabilities were primiparous, 17 women were multiparous, and 9 women were very multiparous. Six of the 36 women interviewed had given birth by cesarean section, and 30 others had given birth vaginally. Just over 80% of the women had given birth to their first child before the age of 31. Only one woman said she had given birth at the age of 15 and another at 52. Just under two-thirds of the women surveyed were unmarried. All the women surveyed said they were in a relationship. The spouses of almost 64% of the women surveyed were people without disabilities.
Conditions of access to maternity services for women with motor disabilities of the lower limbs.
The women questioned on the conditions of access for women with motor disabilities to pre, pre- and postnatal maternity services highlighted three major expectations and three major fears, namely, from their responses, three major expectations linked to the management of pregnancy were highlighted
Physical accessibility of premises, equipment and technical aids
Most of the women interviewed said that they had experienced enormous difficulties in gaining physical access to the maternity unit. They deplored the lack of accessible roads to reach the maternity unit and the limited access to the buildings as well as to the maternity unit's materials and equipment. Their wish was to be able to move around easily and freely in a wheelchair.
Their expectations therefore concerned road access, physical access to the maternity unit and adapted equipment.
A woman in a wheelchair said:
It was not easy for me to get from my home to the maternity hospital because of the rough roads... when I got to the entrance of the maternity hospital, the doors were so small that my wheelchair could not fit through...".
Another woman testifies
"I would have liked to have climbed onto the delivery table alone and with dignity like the other women (so-called able-bodied women), but instead I was lifted up and put down by the nursing staff".
Most of the women mentioned the need to obtain mobility aids, materials and equipment adapted to their needs.
The women interviewed usually use aids and technical aids, but they say that these aids are not suitable during pregnancy.
The medical skills of healthcare professionals
Disability training and awareness
All the women interviewed stressed the need to be monitored by staff who are aware of first the issue of disability and second, the need to manage pregnancies for women with disabilities in general and motor disabilities in particular.
The medical world is a constant source of irritation for these women, who feel that it only leads to misunderstandings. Establishing a relationship of trust between carers and patients is a challenge; in the eyes of these women, a sense of respect and dignity toward them seems to be lacking among medical staff.
The testimony of the woman interviewed highlights this point.
"When I arrived at the maternity hospital to give birth to my first child, the doctor gave me a disdainful look and said, 'That is the one who's adding a childbirth problem to her disability. She's truly unconscious; she needs to learn to keep her legs closed". I was in a lot of pain, but with the pains of childbirth, I could not do anything, so I decided that for my next pregnancy, I would only go to the maternity hospital for the birth, because I'm forced to, and I will not go for antenatal consultations".
The majority of the women interviewed stressed that many negative rumors circulate around them about the pregnancy of a woman with a disability. This is a constant source of anxiety, even though for them, becoming a mother is an extraordinary moment. A better understanding of pregnancy and disability is necessary for them on the path they have chosen. They all emphasized their desire to be informed about all stages of pregnancy monitoring, from prenatal consultations to postnatal monitoring, associated complications and practical advice from medical staff, as shown in the following testimonials.
"...on the delivery table after being examined by the nurse and then by two doctors, a deafening silence pervaded the room without explaining anything to me, although my family had already been informed that I was going to give birth by cesarean section but not myself...without any information from the nursing staff, I thought I had lost my baby and I was afraid for my life".
There was a consensus among all the women interviewed about their ability to make decisions about their pregnancy. One woman made this clear in the comments below.
"Just because I have lost my legs does not mean I'm not in my right mind".
The women interviewed all stressed their desire to retain their freedom and independence. They also agreed that the welcome they received from health professionals at the maternity hospital was not favorable. While reception implies intention and desire, they feel neither the will nor the desire to be received.
The women interviewed all asked for a special relationship with the care staff. For them, a relationship based on trust and respect gives them the confidence they need to become mothers-to-be. This was highlighted in the words of one of the women interviewed, quoted below:
"... when I had to go to the ante-natal appointment, I made sure that doctor X was there that day because he knew me and did not judge me...".
Fears and difficulties
With respect to the fears and difficulties encountered by women using maternity services, three main themes emerged:
Fears linked to pregnancy in cases of motor disability
The fear of successfully carrying a pregnancy to term was expressed by virtually all the women studied.
Most women also fear a cesarean section as a method of childbirth; for some, a cesarean section represents an admission of weakness after a journey fraught with obstacles and having to compensate for this by a vaginal delivery.
In fact, these women felt that a cesarean section called into question their ability to give birth vaginally, something they often protested against. There are also women who worry about Cesarean sections because they are afraid of surgery, afraid of anesthetics, afraid of missing the birth of their child, and even afraid of being excluded from the privileged circle of women who have given birth naturally.
Fears about the unborn child with a transmitting disability
Most of the women spoke of worrying about passing on their disability to their child. They said that they had questions and feared that they would have difficulty looking after their child or that they would not be good mothers.
The difficulties faced by women
Human obstacles
Feelings of guilt about wanting to be a mother, sometimes because of the way other people look at them, often relatives who are hostile to seeing disabled women become pregnant, and health professionals who are not trained in caring for these women. The majority of the women we audited faced barriers caused by discriminatory words and attitudes directed at them by healthcare staff. Nursing staff constantly questioned their right to parenthood. Often labeled "neglect" and "negative words" during the group discussions, these attitudes had a negative impact on both the short-term pregnancy of these women and their long-term desire to have children.
Financial obstacles
One woman interviewed had this to say...the contractions surprised me on the way, and I decided to go to the maternity hospital on my own after phoning my family; I was almost abandoned on the maternity ward. The nurse demanded that I pay for the consultation before she would see me, while I was writhing in pain. She thought I was destitute and could not afford the hospital fees. When my family arrived with two big cars, she rushed over to me with a smile and took care of me. She'd heard it was my family who was there. I wondered for months: if my family could not afford the hospital, was the nurse going to let me die?
The women were unanimous in highlighting the difficulties most of them faced because they were unable to pay hospital fees. This affects their dignity because health professionals are often very unpleasant toward them. They denounce the commercialization of maternity care.
¬Solutions alternatives
The women interviewed said that some of them had set up strategies to access care because of various problems concerning hospital charges. These strategies are sometimes very aggressive, as explained below:
...I'm going to kill myself if no one takes care of me, and then the staff rush in on me.... The women unanimously see this as a way of defending themselves against what they see as discriminatory behavior and attitudes on the part of healthcare staff.
...we have to come as a group to the maternity hospital to put pressure on them to free us (one of us has given birth but is being kept in the hospital for lack of funds).