Women who keep their disabled babies face coercion, discrimination and disdain

Last Monday I attended the second oral evidence session of the Parliamentary ‘Inquiry into Abortion on the Grounds of Disability’ (more background here)

The current law permits an abortion to take place up to birth (40 weeks) if prenatal tests indicate that the child may be disabled when born. There is a legal limit of 24 weeks for abortions on other grounds. 

Abortions are currently permitted at any time up to and including birth if there is a ‘substantial risk’ that the child might be born ‘seriously handicapped’. The law does not define these criteria and they are broadly interpreted.

This ground for abortion is known as Ground E in practice and, according to Department of Health statistics, 2,307 ‘Ground E’ abortions were carried out in 2011.

The Equality Act 2010 protects disabled people from discrimination. The Act prohibits discrimination arising from a disability by preventing one person from treating another less favourably because of their disability. 

The current abortion law thereby discriminates against disabled babies in two ways.

First, it has a different upper limit for disabled babies and babies without disability (40 and 24 weeks respectively). Second, it allows for some disabled babies to be aborted under ground E (those who will be born with a ‘serious’ handicap) but not others.

Last Monday we heard evidence at the inquiry from disability rights activists, parents of children born with disabilities and support groups for affected families.

There were several strong themes that emerged.

First, there seemed to be very little support or information available for families who wanted to keep their babies, as opposed to having them aborted.

Second, there was a strong presumption from doctors that parents with disabled children would choose to have them aborted.

Third, there was a huge amount of subtle or direct pressure placed on parents who decided not to abort. They were repeatedly asked to reconsider their decisions and treated like pariahs – in short they were discriminated against.

It is just this sort of pressure that has led some commentators to talk about abortion for disability as a ‘coercive offer’. And there is a growing literature of personal testimonies around this issue.

Two powerful recent books on the subject are ‘Defiant Birth: Women Who Resist Medical Eugenics’ by Melinda Tankard Reist and ‘A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief’ by Amy Kubelbeck.

‘Defiant Birth’ tells the personal stories of women who have resisted ‘medical eugenics’ and dared to challenge the utilitarian medical model/mindset - women who were told they shouldn't have babies because of perceived disability in themselves, or shouldn't have babies because of some imperfection in the child. 

'They have confronted the stigma of disability and in the face of silent disapproval and even open hostility, had their babies anyway, in the belief that all life is valuable and that some are not more worthy of it than others.

Disparaged and treated as pariahs for departing from accepted medical wisdom they have chosen non-compliance with medical/social prejudice and defiantly said yes to their babies, and no to the cult of bodily perfection.'

This is a controversial book that looks critically at the way in which medical eugenics is being used as a contemporary form of social engineering. Reist has written a strongly argued and trenchant introduction setting out the issues, among them the idea that having children is about ‘quality control and the paradigm of perfection.’

‘Defiant Birth’ explores what is means to have ‘less-than-perfect pregnancies’ and ‘genetically different babies.’ People with disabilities have been raising these issues for many years, but on the whole they remain silent and marginalised in the media.

Several parents recount the joy and love they have experienced with their 'abnormal' babies, including children with Down syndrome and achondroplasia ('dwarfism'). The book also has inspiring stories told by parents with their own significant illnesses and disabilities, including cerebral palsy.

Many write of the pressure, and even blame, from family, friends and professionals, to choose termination, justified as saving their children from suffering. This perspective is challenged by words of those with disabilities. Abortion is also justified to save the community from future costs, which is the fundamental (and profoundly concerning) reason for prenatal testing for abnormalities.

The stories also challenge the idea that allowing a baby with a fatal abnormality to survive to birth will be intolerably traumatic for the family. As mother Teresa Streckfuss poignantly writes about her son, who died 24 hours after birth from anencephaly:

‘Someone asked us after Benedict died, was it worth it? Oh yes! For the chance to hold him and see him and to love him before letting him go. For the chance for our children to see that we would never stop loving them, regardless of their imperfections. Children are always a blessing, even if they don't stay very long.’

The question of babies with disabilities incompatible with life outside the womb is explored more fully in ‘A Gift of Time’. The author Amy Kuebelbeck is a former reporter and editor for the Associated Press and previously wrote about her experience losing a child in ‘Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life’.

The book is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby's life will be brief.

When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, ‘A Gift of Time’ walks them step-by-step through this challenging and emotional experience—from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death.

The book also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive. Their moving experiences are stories of grief—and of hope. Their anguish over the prenatal diagnosis turns to joy and love during the birth of their child and to gratitude and peace when reflecting on their baby’s short life.

‘A gift of life’ is also featured on the ‘Perinatal Hospice’ website, which provides resources and support for those having to care for a dying baby.

CMF previously published a powerful testimony of a Christian psychiatrist who faced just this situation under the title ‘A life Precious to God’ and I have blogged previously about a similar more recent story.

Dame Cicely Saunders, founder of the modern hospice movement said, ‘You matter because you are you, and you matter until the last moment of your life.’

I pray that the testimonies in these two books and this parliamentary inquiry will help lead us to a point as a society where we are prepared to treat disabled babies, these most vulnerable of human beings, with the honour, respect, love and protection that they deserve and to give more information and support to their parents and families.