All Party Disability Abortion Law Inquiry Report

You may recall I was asked to give evidence in Westminster at the All Party Disability Abortion Law Inquiry aimed at reviewing an old law that allows abortion 'up to and including during birth' for babies 'at significant risk of serious handicap' (all undefined). Representatives from all the major parties convened and listened to evidence from various groups and individuals.

Much of the discussion centred around support, counselling and advice given to pregnant women at point of diagnosis, my own personal crusade.

Today the report is released. 

I attach below the press release which highlights all the main points. I have to say, I find it all encouraging. It says exactly what we all hoped it would.

Reduce limit for disability abortion to 24 weeks in line with others.
DS is not a 'severe handicap' but a mild to moderate developmental delay.
Provide support, counselling and unbiased facts for parents to make informed choices.

Now we just have to wait for the next step....

READ THE FULL REPORT HERE

PRESS RELEASE FROM FIONA BRUCE MP
Embargoed until 11.00am Wednesday 17^th July 2013

End the “discrimination against unborn disabled children”, says Parliamentary Report 

The Government must review the Abortion Act and end the discrimination against unborn disabled children, says a major new Parliamentary Report published today.

The report says that the current legislation is out-dated, allowing abortion for disabled babies up to birth and is in urgent need of reform.

It sets out a raft of recommendations aimed at reforming the rules governing abortion on the grounds of disability and ending the wide disparities in how the Act is applied across the country. 

The report, the work of a cross-party Commission, chaired by Conservative backbench MP Fiona Bruce, says: “...it is time to review the moral, ethical, legal and practical framework within which this provision of the Abortion Act operates and how the law applies to a fetus beyond the age of viability...”

“...Parliament should consider at the very least the two main options for removing those elements which a majority of witnesses believe are discriminatory – that is either reducing the upper time limit for abortions on the grounds of disability from birth to make it equal to the upper limit for able bodied babies or repealing Section 1(1)(d) altogether.”

Mrs Bruce commented: “This is an incredibly difficult and emotive issue, which for too long governments of all colours have failed to properly review. In part this is due to the very strong feelings on both side of the debate, usually traduced to an argument between pro-choice and pro-life, as one respondent told the Commission.

Fiona Bruce MP continued: “Given the advances in medical science and the very positive changes in our attitudes towards disabled people since the relevant law was enacted over twenty years ago it is time to review it.”

The Commission received nearly 300 submissions (299) in both oral and written sessions and found “...that there continue to be strongly held and polarised views on how the law treats abortion for babies with disabilities...

“The vast majority of those who gave written evidence believe that allowing abortion up to birth on grounds of disability is discriminatory, contrary to the spirit of the Equality Act, and does affect wider public attitudes towards discrimination.”

Members were drawn from both Houses of Parliament and included, its Vice Chair Virendra Sharma MP, Chair of the All Party Parliamentary Group on Down Syndrome, Lord McColl of Dulwich, who served as Parliamentary Private Secretary to John Major, Robert Buckland MP, Chair of the Autism All Party Parliamentary Group and Chair of the Conservative Human Rights Commission, former TV presenter and Liberal Democrat peer, Baroness Benjamin of Beckenham, Rob Flello MP, the Labour Shadow Justice Minister, crossbench peer and eminent psychiatrist, Baroness Hollins of Wimbledon, Paul Maynard MP, Chair of the All Party Parliamentary Group for Young Disabled People and former three-time paralympian Baroness Masham.

Controversially, the Commission rejected calls for a list of conditions to be published that would meet the “seriously handicapped” criteria as “such a list would inevitably discriminate, on arbitrary and subjective grounds.”

It heard that pregnancies beyond 24 weeks can only be ended on the basis of a “substantial risk” of the child being “seriously handicapped”.  However, the Commission found that the law does not define either “substantial” or “seriously”.

In 2012, according to Department of Health, there were 2,692 abortions carried out under “Ground E of the Abortion Act 1967,” a 17% increase on the previous year; 160 of these abortions took place after 24 weeks.

The Commission expressed concern that some treatable conditions were still being used to justify abortion on the grounds of disability.

They heard that potential disabilities such as cleft palate and clubfoot continue to be used in a small number of cases under Ground E, although in a majority of these cases it was suggested that there were other genetic factors present.

Professor Joan Morris  confirmed to the Commission that she estimated there had been seven terminations in the last decade for cleft lip only and estimated around five for talipes (club foot), but there were no reliable figures. 

The Committee also heard evidence that Down’s Syndrome accounted for around a quarter (512) of all Ground E abortions and that approximately nine in 10 (90 per cent) of babies diagnosed with Down’s Syndrome were aborted.

Leading disability rights campaigner, Mike Sullivan of Saving Downs, called for the law to be changed as the condition was no longer considered to be “serious handicap”.  

“The law should be amended to exclude Down’s Syndrome as it does “not meet the test of a ‘serious handicap’ since it is a mild to moderate developmental delay” and the decades of experience and research on lives lived with Down’s Syndrome prove beyond a doubt that Down’s Syndrome does not meet that criteria.”

Mrs Bruce concluded: “What quickly became clear is that there are wide discrepancies as to how the current law is being applied. Worryingly we heard evidence that the way parents are supported is widely variable across the country - ranging from the exceptional to the appalling; we heard how parents can find themselves only being given a leaflet on abortion, after being told the shattering news that their unborn baby could be disabled, rather than a support package and information on the specific condition diagnosed. Some parents told us they felt pressured into having an abortion and that they 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.

We also heard good examples of support and counselling, and one of the most important of our proposals is to recommend that best practice guidelines are developed to ensure parents are provided with practical and balanced information from trained experts as soon as possible after discovery of a fetal disability, so they can make an informed choice.

As one parent told us, summarising what many others reported: “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.”

I hope our findings will kickstart and inform a much needed debate on this issue.

It can’t be right that nearly 50 years after abortion was legalised, we still discriminate against unborn disabled children, even on conditions that we would not describe as serious.”

ENDS

NOTES TO EDITORS

The current law permits an abortion to take place up to 40 weeks (or birth) if tests for disability indicate that 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.

The legal limit for all other abortions is 24 weeks.

In light of the current legal position, the Parliamentary Inquiry into Abortion on the Grounds of Disability sought evidence from parents, medical practitioners, academia, support groups, disability groups, lawyers and individuals with an interest regarding the current theory, practice and implications of the approach to abortion on the grounds of disability in the UK.

The terms of reference of the Commission were to:

·         Establish and assess the intention behind the law governing abortion on the grounds of disability.

·         Establish how the law works in practice and is interpreted by medical practitioners.

·         Determine the impact of the current law on disabled people and assess the views of       groups representing their interests.

·    Assess the effectiveness of the information and guidance provided to families following the diagnosis of a disability and the impact that has on outcomes.

·      Examine how the law, guidance and support for practitioners and families can be developed going forward.

Committee membership

Fiona Bruce MP (Chair)

Virendra Sharma MP (Vice Chair)

Paul Maynard MP

Baroness Hollins of Wimbledon

Robert Buckland MP

Lord McColl of Dulwich

Stuart Andrew MP

Baroness Benjamin of Beckenham

David Simpson MP

Baroness Masham of Ilton

Rob Flello MP

Dr John Pugh MP

Baroness Knight of Collingtree

Evidence in Parliamentary Disability Abortion Law Inquiry

As many of you know I was asked to give evidence in a Parliamentary Inquiry into the current Disability Abortion Law in this country.

With exactly a week’s notice I was given the important honour of being asked to speak in a multi party Parliamentary Inquirty into Abortion on the Grounds of Disability that would try to:

•      Establish and assess the intention behind the law governing abortion on the grounds of   disability.
•     Establish how the law works in practice and is interpreted by medical practitioners.
•      Determine the impact of the current law on disabled people and assess the groups representing their interests.
•      Assess the effectiveness of the information and guidance provided to families following the diagnosis of a disability and the impact that has on outcomes.
•      Examine how the law, guidance and support for practitioners and families can be developed going forward.

Very well aware that this is a highly emotive subject, I accepted and began my research. I didn’t sleep before about 3 am on several consecutive nights, reading around the law, which limits abortions to 24 weeks except in the case of Ground E abortions for babies ‘at high risk’ of ‘severe handicap’ (not defined), for whom a termination is possible ‘up to and including during birth’, and believe me, you do not want to know details of what that entails.

I found and absorbed, tried to understand and respect if possible, every conceiveable opinion from considering contraception as murder to believing in a woman’s right to choose to terminate at any stage of pregnancy and for any reason, including the baby’s sex.

I found many important ethical questions raised, such as how this difference in law constitutes disability inequality, how it must make people with disabilities feel about how they are valued in society, or how pregnant women of babies with disabilities are being singled out for a much less supportive service than those carrying a healthy baby. Even how the notion of ‘choice’ that is often used with the decision to terminate is often not so much a choice, because that is being offered as the only option and therefore parents are often not ‘choosing’, but being coerced, persuaded to go down that route which they see as the only one available.

Those whose opinions sit at either end of the scale seem to be the ones who shout the loudest and get the most media attention. This cemented my resolve to voice the experiences and thoughts of the quieter many who sit somewhere in between. My nerves grew more and more frazzled. I live in the quiet of the countryside, London is a 5 hour journey away, I’ve never even visited the Houses of Parliament as a tourist, let alone spoke on such a hot topic there.

I found out that I would have about 5 minutes to speak, that’s not a lot of time at all. So, I set about writing a piece that could contain as many real anecdotes from other families’ experiences of testing, diagnosis and support as possible, that would shout about how gloriously wonderful our children are, that would express our concerns that our children are being misunderstood and feared.

I set out on Monday morning, my speech in triplicate in different areas of my luggage in case I lost one. I printed a collage of photos of Natalia enjoying everyday activities, to hand out to the 14 MPs who might be present. After all, a picture speaks a thousand words.

The photo I handed out to the MPs, showing Natty from birth, through heart surgery and enjoying a full life.

I arrived monstrously early to clear security at Westminster, and sat down for an informative chat in the coffee shop with Sue Buckley, Head Scientist at Downs Ed.

Sadly Dr Liz Elliot was taken ill and couldn’t attend. I was yet to meet Lucy McLynn, Mum of Daniel who is Natty’s age, and an equality lawyer who would also be giving evidence, along with representatives from the Cleft Lip and Palate support group (CLAPA), Beezy Marsh, a freelance journalist with a history of research into abortion statistics and DR Kevin Fitzpatrick OBE who was to turn out to be one of the most inspirational speakers I have heard in a long time.

London was freezing, snow was in the air, the Houses of Parliament are very old and not very well heated. I had swapped my country wellies and fleeces for a serious dress and heels. That and my nerves conspired to make me shake, well, not nerves exactly, but my extreme keeness to get my point across in the little time I had.

My time came. This is approximately what I said to Fiona Bruce MP, Virendra Sharma MP, Baroness Hollins of Wimbledon, Baroness Benjamin of Buckingham, Rob Flello MP and their team, including members of the public who were present. The stenographer wrote down the exact words and the transcript will be online at www.abortionanddisability.org in just over a week. Last week’s evidence will be online in a few days. Two more sessions will follow next month including evidence from a woman with Down's Syndrome.

I believe that I typified the completely ‘average’ prospective parent before Natalia was born.  My opinions on abortion were not extreme, one way or another. I understand the need for women to have a choice, but I also have a strong sense of humanity.

I know that I speak with honesty for masses of families with loved ones with DS now. I have woven their shared stories into what follows.

When pregnant, I bandied about the universally used soundbite we all say without thinking;

 "I don’t mind what the sex is, just as long as it’s healthy…"

 (and what if it wasn’t? What is the dangerous unspoken subtext there?)

I have always been respectful of those with disabilities, but did not think it would ever affect our lives personally. Nobody does.

I call this the blissfully ignorant, arrogantly complacent time of our lives. The time before we broke through the glass ceiling, and understood what life was really all about.  The time we protected ourselves with a naiive sense of security that a healthy, clean living, woman like me would, of course, be expecting another healthy baby and that that was all that mattered. That is was the only goal in life. I think differently now of course.

I hate to think what might have happened had we known Natalia had Downs Syndrome, had we not feared the risk of the invasive tests after several miscarriages, had our midwife not wisely said it wasn’t important to know.

What if we had opted for the new early blood test, you know, "or peace of mind"? (Screens only give you peace of mind if you hear what you want to hear don’t they.)

I might have panicked, swept away on the tragic language of doctors;

the "risk of our baby having DS", their "concerns".

Being told that she had "tested positive", the ways in which she would "suffer from" the Syndrome.

I might have wanted that "afflicted" baby out of me as soon as possible, worried about the life she would struggle through, the pain she would feel, fuelled by my own fear and ignorance.  

If the medical professionals we trusted implicitly simply gave us two leaflets at point of diagnosis, one on CVS, the other Termination, and warned us gently and sympathetically not to approach any Downs Syndrome support groups because they are ‘pro life and would try to change our minds with emotional blackmail’ would we have followed their lead?

If our community midwife had rung us at home on Friday evening with the "bad news" of a "chromosomal abnormality" (or worse still popped a scribbled note, not in an envelope, through the front door for extended family to find) and straight away said there was a slot for a termination on Monday morning, would we have assumed that was our only viable option?

The answer is I don’t know what we would have done.

Perhaps I would have wanted to keep the little life that was moving inside me, and my husband not...what then?  Perhaps we would both have rallied and strengthened ourselves in time.  Perhaps we would have had a balanced and unbiased consultant who gave us all the options, they must exist. Who knows.

But approximately 92% do feel there is no other way out in a society that still stigmatises disability and with support networks ever decreasing.  

I do know parents aren’t being given balanced information in order to make informed choices and are left with little or no support or couselling during or after testing, diagnosis or termination.

A woman I met recently was sympathetically told ‘this must have been a very difficult decision for you to make’ by a midwife as she birthed a baby she was sadly miscarrying naturally. Such is the assumption that parents will terminate.

Other couples, having made the decision to continue with a pregnancy are being asked if they are “sure” at each scan and medical appointment, and reminded that a late termination can be “arranged”.

I like to hope the reasons for this are the doctor’s own ignorances, an out of date view of disability, a residue from the days of institutions.

I fear it is more a question of cost.

Natty is 6, an ambassador, a teacher and melts hearts wherever she goes. She puts back far more into society than she takes from it, as she entertains, laughs, sings, dances, jokes, brings people together, even models professionally, bringing inclusion into advertising and widening our narrow concepts of beauty.  She has taught many acceptance, understanding and patience, for inclusion is a 2 way street that I sadly missed out on growing up in the 70s.

She has made me a better person.

She intuitively watches out for the emotional needs of her friends and classmates, always there for the needy, the upset, the ones with the bumped knees, anyone who needs a quick rendition of a Mary Poppins tune to rouse them.

You see, a person's worth can never be measured in pounds coins.

Having a disability does not make you sub-human and we should therefore all be protected by the same laws. There will always be extreme exceptions needed to protect the most vulnerable women in society, but the abilities of the foetus should not be a factor.

Do I think DS a serious handicap? No.

Do I think it’s a reason to terminate on it’s own? No, although I would never judge anyone's decision. It is not an easy road.

Do I think terminations up to and including during birth should take place? No. When I told those in our community about this Inquiry, all were universally shocked that this is legal in our society.

“Barbaric”

“Archaic”

“Appalling”

“I’m stunned”

“My little one was only X weeks when she was born.”

“DS, Cleft lip, club feet? Whatever next, ginger hair?

I leave you with the words of Natty’s big sister Mia, 8. The sibling I worried would be affected negatively by her disability in the early days:

To Natty

I love you so much

and you are the best sister

in the world and so preshus to me.

You are so important to me

and if you weren't in this world

my life woudn't be the same

and that would be terrible.

So, I love you very much and you mean evrything to me

Lots and lots of love from Mia xxx

That, in a nutshell was that. Others spoke factually and brought figures and legal points to the table. We were all a different shade of the same painting. Every one equally important part of the bigger picture being created.

There followed questions on whether we thought eugenics was at work. We all had to agree it very much looked that way.

What did we feel should be done to support families. Be given balanced info of all available options, offer prospective parents a chance to meet existing families, change doctors’ loaded language to more neutral and person-centred lay terms. I am still reeling from the Mum of a little one with a cleft lip who was told during a scan that her baby had ‘a facial deformity’.

There are many incredible medical angels out there. Thank you to them. Let’s create a few more, uncover the hidden statistics and get some proper balanced support for parents, whatever their decision is at the end of the day.

Most Important Role of My Life

Some things are so important that you barely know how to begin to describe them. 

It's almost as if saying it aloud makes it even more daunting.

I have been asked give evidence in a Parliamentary Inquiry into the current UK Disability Abortion Law to a multi-party commission.

So I will be travelling 5 hours each way for what might prove to be the most crucial 5 minutes of my life. The power to change things in a very real way is at our finger tips, 'we' being a team of 'experts' including Sue Buckley (DSA) and Dr Elizabeth Elliot (DSRF UK).

I want to speak for everyone of us and for every one of our children.

Now abortion is a very emotive subject full stop. 

My 3 nights solid of research have dug up opinions on every single point of the sliding scale between not approving of the contraception to believing that every woman has a right to decide what happens to her body right up until the point of birth regardless of her reasons, and everything in between. Personal opinion, religious belief and background all make us different and I respect that. On the other hand I have read things I really rather wish I didn't know.

This debate is not about that. Here are the facts as I understand them:

This debate is about the current UK 1967 Abortion Act (similar exists in some US States too) which limits terminations to 24 weeks. 24 weeks that is, unless 

'there is substantial risk that the child might be born seriously handicapped'. In this case abortion is permitted at any time up to and including during birth. These are known as Group E abortions.

The law does not define 'substantial risk' or 'seriously handicapped' and they can be interpretted differently by doctors or parents. Down Syndrome is included.

Further digging around revealed that annual figures for Group E abortions are fairly well hidden. There are discrepancies in the numbers recorded depending on who you ask.

Many of you have experience of being offered these late stage abortions, maybe some have felt pressured into them. With current early testing there seems no earthly reason to allow them.

What we are setting out to do is bring equality of rights to the foetus with a disability.

Stop all late stage abortions unless a mother's life is in danger.

Ensure proper unbiased support for families at point of diagnosis and ensure they are given full facts before making more informed decisions. 

Establish the intention behind the law and how it is interpreted by medical practitioners.

And of course state that Down Syndrome is not a 'serious handicap'. That goes without saying.

Wish me luck.

H x

For a more personal stance, from the archives: read Diagnosis Down's 

Also relevant: What to Say When a Baby is Born with Down's