Aborting the disabled
Concerns have arisen that the medical profession encourages women to abort disabled babies.
Brighton midwife Veronica Langford says that pregnant women take a barrage of tests without understanding their purpose. They often feel abortion is the expected outcome if tests show abnormalities.
“I see women coming in who haven’t had proper counselling about what these tests are about,” she said.
“They’re just given the information, booked an appointment, and sort of almost found themselves on a conveyor belt without really knowing what they’re getting themselves into.”
“The subtle message is, you’ve got a baby with a disability, in a sense that shouldn’t be happening.
“I think people genuinely think, and this is doctors, scanners, that is the right thing to do. There is this idea that bringing a child into the world with a problem is actually the wrong decision, and that you’re not being kind or loving by doing that.”
She explains how tests are carried out and how the medical profession sometimes creates a bias.
Women who choose to abort a disabled child are making a statement about themselves, not about disability, says Niav Keating of Choice Ireland.
“Personally I think a woman whose attitude towards her pregnancy changed, when she finds that it’s affected by an abnormality, she’s not making a social or political statement about disability. She’s make a statement about her self, what she feels she can cope with and what she wants.”
She also added that services in the Republic of Ireland were “abysmal”, making it difficult to cope with having a disabled child.
Medical practitioners are expected to provide balanced, non-directional information to help people make an informed choice about having a disabled child. A 2006 study by the Down’s Syndrome Association (DSA), however, seems to indicate that there are problems with antenatal testing and the way parents are informed about their child’s disability.
The organisation said that many healthcare professionals had a “prejudiced or outdated view” of Down’s syndrome. According to a survey, “It was often felt that it was assumed by health professionals that families would terminate a pregnancy if they received a positive diagnosis.”
The report also raised fears that because of lack of information and apparent biased attitudes from medical professionals, some families would feel pressured to go through traumatic late terminations.
The study showed only 45% of people surveyed were given information about Down’s syndrome after receiving antenatal test results. Fifty percent were given practical information, such as telephone numbers for local support groups.
The DSA said excellent literature was available to inform parents about the condition and support available, and recommended wider distribution of these leaflets to help parents make an informed decision.
The question of whether a disabled life is worth living is a very difficult one with no straightforward answer.
“It’s not a lifestyle that we’d like but it’s very adaptable,” says Helen Pearson, a nurse who works in Southampton.
“It’s amazing the type of children you come across who have disabilities. They’re just the happiest children I ever meet.”
The Every Disabled Child Matters (EDCM) campaign, consisting of four major organisations that work with disabled children and their families, states that “Disabled children, young people and their families have been left out for too long…We want all disabled children and their families to have the right to the services and support they need to live ordinary lives.”
A 2006 report commissioned by DfES on services for children with special needs confirmed their concerns. It revealed that there were major gaps in family support and respite care, social and leisure opportunities, and facilitating the transition of older children into adulthood.
Support and facilities for families with disabled children and for disabled people in general differ from region to region in the UK.
However, the government is making attempts to improve services for disabled children. Recently Ed Balls MP announced a substantial £340m package will be invested in services from 2008 to 2011, with a focus on addressing the most urgent needs highlighted by the DfES report.
"As founder members of the Every Disabled Child Matters campaign, we've lobbied long and hard for this funding, so it's very good news," said Contact a Family Chief Executive Francine Bates. "The pot's large enough to begin a transformation of families' lives - but now the challenge is to make sure the money is spent where it is most needed in consultation with parents, disabled children and young people."