Disability and discrimination

The Paralympics in London last year demonstrated the extraordinary abilities and determination of sportsmen and women with disabilities. Shortly after, it was pointed out in a letter to the Daily Telegraph that there was a certain irony (hypocrisy?) in London hosting this international event and giving it excellent media coverage, while the UK law on abortion allows babies to be aborted up to the moment of birth if they are disabled, but only to 24 weeks if there is no disability.

Moreover, from the moment of birth, a whole panoply of equality laws provides protection for babies with disability to ensure they are treated the same as those with no disability.

Ground E of the Abortion Act 1967 is the source of this legal discrimination.[1] In 2012 there were 2,692 abortions carried out under Ground E. 144 of these abortions took place after 24 weeks. Down’s Syndrome accounted for around 20% (544) of all Ground E abortions.

The legal option to abort babies at any time up to birth for disability has been the focus of an important ‘Parliamentary Inquiry into Abortion on the Grounds of Disability’, including representatives of all three political parties, which published a new report in July claiming that the current rules are outdated and could amount to discrimination. This finding reflected the evidence presented to the Inquiry, as the majority of the 299 oral and verbal submissions viewed abortion on disability grounds as discriminatory.

Indeed, it seems impossible to view the law in any other way than discriminatory, as it singles out only disabled babies for abortion to birth.

Moreover it gives tacit approval discrimination which, it appears, does not end with our abortion law. One Paralympian writes in the Guardian this week of the overt discrimination he, and other disabled people and their carers, frequently face…when not wearing an Olympic tracksuit.

The Commission recommended that discrimination should be removed from the law either by eliminating the ground for abortion for disability to birth completely (Ground E) or by reducing the upper time limit for abortions for disability from birth to the upper limit for able bodied babies ie. 24 weeks.

What is ‘serious’?

Ground E permits pregnancies beyond 24 weeks to be ended on the basis of a ‘substantial risk’ of the child being ‘seriously handicapped’. However the Inquiry heard that these words have sometimes been very widely interpreted to include club foot and cleft palate – both of which can be treated with surgery. There were therefore a number of calls to define the words of Ground E: ‘substantial risk’ and ‘seriously handicapped’.

There is some justification for this request. Because the law does not define either ‘substantial’ or ‘seriously’ it puts doctors in the unenviable position of deciding what degree of handicap qualifies for legal protection and what doesn’t. It places doctors in the position where they have to make decisions which discriminate against and between levels of disability.

However, there was a strong belief from many witnesses that a list approach to defining disability would not be ‘workable’, ‘feasible’ or ‘flexible’ enough and would not allow doctors to take into account the views of parents or consider other factors like the parents’ situation and the support available. The Anscombe Bioethics Centre said that: ‘guidance suggesting criteria for seriousness of disability would not remove the discrimination but would simply shift it onto a more precisely defined group of people.’

The Commission decided against recommending a list approach as it felt that it would inevitably discriminate against people with specific disabilities on arbitrary and subjective grounds. However it recommended additional written justification should be provided for abortions after 24 weeks, as well as a post mortem.

What influences parental choice?

Another issue that came to light in the evidence sessions is how many parents felt that the information they were given by health professionals varied hugely, from being biased, negative, uninformed and incorrect, to (occasionally) ‘fantastic’ and helpful. The impact of a diagnosis of disability on the parents is life changing and how it is handled can significantly change the outcome and long-term impact on parents.

A common message of parents who gave evidence was that they are ‘steered towards abortion and feel that they do not receive adequate information about other options, including palliative care after birth and adoption, as well as the reality of living with a child with a disability.’

For example one parent told the Commission: ‘To give a family a diagnosis of a disability and then to immediately follow that up with the advice that they can have a termination without any other information is simply not acceptable in a civilized society.’

Some parents said that they felt pressured into having an abortion and had to find out for themselves from the internet information about the condition diagnosed and any potential support for them should they choose to keep their baby.

Here are some enlightening quotes from a few witnesses:

‘I have heard it anecdotally that some obstetricians and gynecologists are saying to their patients: “…once we’ve discovered it has a fetal abnormality…if you insist on carrying on with the pregnancy, I won’t treat you anymore”.’

‘I do know women aren’t being given balanced information at the point of diagnosis in order to make informed choices, and are left with little or no support or counselling during testing, after diagnosis, before termination, after termination, if that’s what they choose…Worse still, even after a decision to continue with a pregnancy, couples are being asked if they are sure at each scan or medical appointment, and are being reminded that a late termination can be arranged. I know families that have had to insist that notes are written across the top, in a large banner, ”please do not ask me any more about this”.’

‘The assumption is, if you get that diagnosis, you’re going to terminate your pregnancy, and that’s where everything is being pushed, in terms of information, in terms of support. You get plenty of support around a termination. There isn’t other support.’

‘I fear it’s more a question of perceived cost or eugenics, in a society that stigmatises disability, and with support networks ever decreasing.’

As a result of this revealing and disturbing evidence the Commission recommended more ‘consistent, balanced information, trained counsellors, increasing awareness of palliative care for newborns and comprehensive support for the medical profession whatever the parents’ decision about their pregnancy.’

Fiona Bruce MP, Chair of the Commission, encourages people to write to their MP and Ministers in support of the report and to affirm the equal value of every human. She hopes the Report’s findings will: ‘kick start and inform a much needed debate on this issue.’

I couldn’t agree more.