BEING pregnant or contemplating becoming pregnant is a challenging experience for most women. As well as feeling happy and delighted at the prospect of having a child they may also be vulnerable. They may feel scared as they enter a new phase that will change their lives utterly and forever: they may even feel intimidated by an army of medieval and healthcare professionals. But then when they read childcare books, attend antenatal classes and meet other women like themselves, most feel better as they enter into the spirit of the adventure ahead.
But for significantly disabled women these challenges are magnified. Disabled women also feel vulnerable and scared; their lives, too, will change utterly and they have a greater reason than most to fear medical professionals. It's harder for them to find books about pregnancy that relate to their specific needs and harder for them to meet other women like themselves. When pregnant, they can feel isolated and alone.
The recent Report on the Commission on the Status of People with Disabilities outlines some of the difficulties disabled women face when they consider parenting. The major fear identified is that disabled women will give birth to disabled children. It may well be, suggests this report, that this fear that disabled people reproduce themselves is the primary source of all prejudices that disabled people experience in relation to their sexuality. Studies in other countries have indicated that this prejudice is formalised when the children of disabled mothers are taken into care against their wishes, or when disabled women lose custody of their children to their partners when they separate.
Although society's fears that disabled women will produce disabled, children are for the most part unfounded, these fears have resulted in severe discrimination against disabled women, according to international studies.
"Nondisabled people talk freely of their desires to reproduce mirror images of themselves and it never made sense to me as to why it's OK for them to have that need and to express it and have it affirmed, but why it's not OK for me to have the same desire," argues Rosaleen McDonagh (28), a student in Trinity College, Dublin, who uses an electric wheelchair and employs a personal assistant. She says that while she would like to have a child, she changes her mind frequently. However she is determined that hers will be a real choice - not one limited because of her physical circumstances.
The Commission's report also questions society's perception that disabled people are not it or "able" to be parents. This is intimately linked with "non voluntary" sterilisation as an issue that concerns disabled women more than disabled men.
"There is always the suspicion under any anaesthetic, even if it's only got to do with my big toe, that they are going to use the opportunity to remove my womb. That is a huge fear and it's a very real fear, says Rosaleen.
Young disabled women frequently experience a heavy assault on their sexuality, often by well meaning parents: "They said it was never going to happen, that I was looking for someone who was not out there for me. They didn't say it in a cruel way, but gradually, so that I might accept it," says Carmel Daly McDonnell, who was born without arms and legs as a result of Thalidomide and last week gave birth to her first child a son.
Both Carmel and Rosaleen have, faced the dilemma of how they would feel about having a disabled child, especially a child with the same impairment: "If I thought for one moment that I was carrying a Thalidomide child I wouldn't be pregnant now," said Carmel shortly before giving birth. While she, like any other pregnant woman, faced the possibility that she might have a disabled child, she thinks that deliberately bringing one into the world is a different matter entirely.
For Elaine O'Neill, who is blind and the lone parent of two young sighted boys, there was a possibility that if she had twins they might inherit her impairment. I'd rather have a child that couldn't see rather than that the child would grow up in a family that didn't understand - a family that would have to learn about blindness and make all the mistakes first."
The only difficulty for Elaine in having a child that couldn't see would be sending him or her away to a boarding school just as she was herself when she was six. "I couldn't imagine my child not having someone to hug them and tuck them up in bed at night. All the little things that happen them - they don't always tell you, but you known by them and you have to get it out of them. And oh. .. just the loneliness - I wouldn't want my child to have to go through that."
All prospective mothers worry that they won't be able to cope; but for some disabled women, coping too well can become the problem. "I was seen to be coping very well and I was never offered help," says Elaine. "I would have been too proud anyway at the time to take it. I would have felt that other people were seen to be caring for my children and note me and that was important at the time."
Like any mother, disabled women worry about their children's safety, their security, happiness and self esteem. In addition they worry that their children may reject them or be ashamed of them because they're different: I have a slight fear that he will reject me because he might, be bullied at school because of the way I am," says Carmel Daly McDonnell, who has a lifetime of parenting in front of her. However, for Elanie O'Neill, these worries did not materialise: "I've noticed that my children don't warn their friends that they are coming home to a house where their Mammy can't see.
I've heard them when they bring their friends in and all they say is `My Mammy's blind now, so don't get in her way, and don't leave anything round or she'll fall over it, but that's it."
Elaine, who has been a lone parent for seven years, feels strongly that emotional support is a primary need for disabled mothers. "There's just no counselling for disabled women and their partners in relationships and while there are lots of facilities for parents and their disabled children, there is virtually nothing for disabled parents and their children."
In the near future, before her boys get much older, Elaine would like to see more financial help and state support and allowances to relieve the inherent stress in being a disabled mother.