Abortion (Disability Equality) Bill [HL] –
24 February 2017
Report Stage
My Lords, I will speak against the amendment and support the noble Lord, Lord Shinkwin, in bringing the Bill forward. The noble Baroness, Lady Tonge, and the noble Baroness, Lady Barker, who is sitting in front of her, will not be surprised that we take a diametrically opposed view of this and not for the first time in our lives. They will recall that the reason I left their party was their proposition, in 1992, that abortion should become party policy rather than a conscience question. I have always been saddened that this issue should be politicised. Diametrically opposed views can be sincerely held for perfectly good reasons.
The noble Baroness, Lady Tonge, and the noble Lord, Lord Winston, have spoken as doctors. I am only the humble father of a doctor but I had the chance earlier this week to speak to two eminent doctors, one a former president of one of the royal colleges and the other a former president of the BMA, both of whom are opposed to the amendment. For one this is because of the danger of misdiagnosis. She gave me the specific example of a baby whose mother had been told it had a fatal foetal disability, but this did not turn out to be the case when it was born. The other said that it is far better to go ahead with the pregnancy and for the baby to be delivered in order to help the mother at that stage. I will come back to that point in a moment, because it is borne out by the guidance of the Royal College of Obstetricians and Gynaecologists in the submission it made on this subject in 2010.
We can disagree about these things, but let us at least accept that there are grounds for honest debate.
I wish that the noble Lord, Lord Winston, had been able to bring forward his amendment in Committee, when we would have been able to have a more robust argument and discussion about it. It is strange that this amendment should be laid before your Lordships’ House at 24 hours’ notice before Report. Since it has been, I have done my best to discuss it with others who know more about these things than I do.
In 1990, when a Member of another place, I moved my only amendment in 18 years in the Commons on which there was an equality of votes. Mr Speaker Weatherill—who became Lord Weatherill—had to use his casting vote for the status quo. He was one of my two sponsors when I became a Member of your Lordships’ House and I know through subsequent discussions with him how disturbed he was that he was not able to follow his conscience that day but had to follow precedent in upholding the status quo. My amendment sought to ensure that, in the 1990 amendment to the 1967 Abortion Act, the nature of the disability would be placed on the green form authorising the abortion. I was challenged by Harriet Harman who said that it was scaremongering for Professor John Finnis, one of the country’s preeminent authorities on jurisprudence, to suggest that the legislation as drafted could lead to abortion on the grounds of cleft palate. As noble Lords know from the figures that have been produced, there have been abortions post-24 weeks’ gestation on the grounds of cleft palate. Notwithstanding the examples the noble Lord gave a few moments ago, 90% of all babies diagnosed with Down’s syndrome in this country are now routinely aborted.
I have never described the Department of Health as being responsible for eugenics and I would never do that, nor do I believe that doctors in this country are. The noble Lord, Lord Shinkwin, has said that society slides into eugenics when these things become normative. Therefore, I hope that when the noble Lord replies to the debate, he will tell us exactly what the list of disabilities is that cannot be diagnosed before 24 weeks’ gestation. Despite my own strongly held views about the law—indeed, 8 million abortions have taken place in this country since 1967, there are around 600 every working day and one in five pregnancies is now ended on those grounds—this Bill is not about that. This Bill is about equality legislation and discrimination, and whether a child with a disability should be treated differently from an able-bodied child.
I simply point out to your Lordships that there is a certain irony, as the very last words spoken by the Minister at the Dispatch Box in the previous debate was on a Bill about car parking and were about ensuring equality of opportunity for disabled people to be able to park in car parking spaces. All Members of your Lordships’ House have properly campaigned over the years on the rights of disabled people, and have a huge reputation in this country for asserting those rights. Is there not an inconsistency if we campaign for ramps to be attached to public buildings in this country but say that it would be better that someone with a disability had not been born in the first place? What sort of message does that send?
I do not think that people like me can put forward arguments such as this if we are just anti things. One of the things in which I got involved in my own city of Liverpool was the building of the first baby hospice in the country, Zoe’s Place, of which I continue to be a patron, and others have since been opened. It was built specifically to help mothers in this situation. You have to be positively for the unborn child but for the mother as well in these tragic and very difficult circumstances.
I admire medicine when it is at its best. The noble Lord, Lord Winston, and I sometimes disagree. Nevertheless, he knows that I hugely admire a lot of the work that he has done. When noble Lords such as the noble Lord, Lord Winston, are able to develop—as they are doing—surgery in utero to deal with things such as spina bifida, that is good science and good medicine marching hand in hand with good ethics. However, if I were to say to the noble Baroness, Lady Barker, for instance, that I was in favour of abortion beyond 24 weeks for reasons such as gender, race or—if it could be diagnosed—orientation, what would your Lordships say to me? I hope that they would rebuke me. That is why I argue that we should treat disability in precisely the same way as those issues.
I said that I would return to what the Royal College of Obstetricians and Gynaecologists had to say. There were two things, one of which shocked me, when I read the details of what happens in late abortion of this kind. This is the college’s description, not mine:
“Intracardiac potassium chloride … is the recommended method to ensure fetal asystole. After aspiration of fetal blood to confirm correct placement of the needle, 2-3 ml strong … is injected into a cardiac ventricle. A repeat injection may be required”.
It goes on to describe other ways of doing this. This is a late abortion. Babies have been born and lived from 23 weeks’ gestation, so this is beyond viability that we are talking about. The college also states:
“Most women will be unaware that, within the NHS, medical abortion induced by drugs is the procedure usually offered after 14 weeks of gestation. The prospect of labouring to deliver a dead fetus will be difficult for many and discussions about the procedure will require sensitive handling by experienced staff. Although the prospect of labour in these circumstances is especially daunting, some women gain some satisfaction from having given birth and have welcomed the chance to … hold their baby”.
The college goes on to talk about the options that need to be offered for pain relief,
“and whether the woman might want to see the baby and have mementoes such as photographs and hand and footprints … She will … be made aware of information from a postmortem … These discussions are likely to be distressing for the woman and her partner”.
So let us be very clear that this is a tragedy for everyone involved.
I turn to the noble Lord’s amendment. It states that,
“there is a high probability that the fetus will die”.
We are drafting legislation here. What does this mean? Is the probability 99.99990%, or 50%? How should a high probability be objectively defined in law? Why is that not specified in the wording of the amendment? I am very disturbed by the fact that the noble Lord’s amendment says that you may go on to carry out these procedures “shortly after delivery”, when the baby has been born alive. Is this a matter of minutes, hours, days, weeks, months or, arguably, even years? It needs to be clearly defined in law, otherwise it will be interpreted far too widely. That is why the amendment should have been brought forward in Committee, when we could have had a proper discussion about it. However, I hope that the amendment will be resisted and that the Bill in the name of the noble Lord, Lord Shinkwin, will be given a safe passage so that it will have a chance to go forward and there can be a proper debate about it in another place.
My Lords, I thank all noble Lords who have expressed support for my Bill and I thank the noble Lord, Lord Winston, for his medical lecture on so-called serious foetal anomalies. I address the noble Lord, Lord Winston, with respect but I also address him and all other noble Lords as an equal. I should say at the outset that I totally reject the very premise of this amendment. Other noble Lords have already explained why the amendment is totally inappropriate and, indeed, crassly insensitive, from a Northern Ireland perspective in particular, when it is linked to Amendment 8. I offer a disabled person’s perspective on why it is unacceptable. I have been consistently clear that the purpose of my Bill—a disability rights Bill—is to bring the law as it applies to disability discrimination before birth into line with the laws that your Lordships’ House has already passed to counter disability discrimination after birth.
Noble Lords will know that I accepted an amendment in Committee for an impact review as a logical amendment to a logical Bill. However, in the context of a Bill which promotes disability equality where discrimination begins before birth, this cynical amendment is not remotely logical. Indeed, it runs counter to very essence of my Bill. The amendment reinforces discrimination because it singles out even more acutely a particular group for destruction on grounds of disability. It seeks to legitimise their destruction after 24 weeks with terminology that commands no clinical consensus and despite the fact that cell-free foetal DNA can first be detected in maternal blood as early as seven weeks’ gestation, which means that genetic or chromosomal abnormalities are being detected well in advance of 24 weeks. So what justification is there for abortion after 24 weeks on the grounds of so-called serious foetal anomaly?
Some noble Lords have seen that I recently asked the Department of Health about the number of fatal foetal abnormalities diagnosed in each of the past five years. The answer was that the information is not collected centrally. I followed up and asked about the number of fatal foetal abnormalities diagnosed after 24 weeks in each of the past five years. The answer was the same: the information is not collected centrally. I find that revealing, not because information is being concealed but because it reflects the reality—the truth of the situation.
Those noble Lords who were invited to attend a meeting on this issue, which I understand was held somewhere in the House on Wednesday, could be forgiven for thinking that there is some medical authority—some clear medical consensus—behind the definition of “fatal foetal abnormality”. There is not because there is not an agreed definition. Indeed, the consensus is that what is considered fatal or life-limiting involves a degree of subjective judgment which is influenced by understandings and by the availability of technology, both of which can change with time. The noble Lords who received the invitation to that meeting might also have got the impression, as was intended by the wording of the invitation, that those 230 disabled babies aborted after 24 weeks in 2015 had all been diagnosed with severe or fatal foetal abnormalities. They were not. Of the 659 babies aborted for the crime of having Down’s syndrome, for example, two were aborted at 25 weeks, one at 26 weeks, one at 28, one at 30, another at 31, three at 32 weeks, two at 33, two at 34—and one at 39 weeks.
2.45 pm
The question for me, apart from the obvious one of why the severely disabled Member of your Lordships’ House sponsoring the Bill was not even contacted about the meeting, is therefore twofold. First, how do the organisations behind the meeting—the British Pregnancy Advisory Service, the Family Planning Association and the organisation for termination for abnormality, now named euphemistically as Antenatal Results and Choices—know that the 230 disabled babies aborted in 2015 after 24 weeks because of their disability had all been diagnosed with severe foetal abnormalities? The answer is that they do not know. The Department of Health has already said that the information is not held centrally, so none of these organisations knows this and neither does the noble Lord, Lord Winston. So secondly, why should they have insinuated and implicitly claimed this? The answer is in their overtly discriminatory agenda, which informs both this amendment and the noble Lord’s complete failure even to make contact with me.
This amendment is completely inappropriate and incompatible with the progress achieved on disability rights, which your Lordships’ House can be rightly proud of helping to secure. That is quite apart from the crass insensitivity to me, as a disabled and equal Member of your Lordships’ House, of the noble Lord’s hijacking of my disability equality Bill in order to advance a blatantly discriminatory eugenic agenda.
I understand why those who oppose my Bill are desperate to misrepresent it and to say that it is all about abortion, which it barely touches, and to ignore disability equality and disability rights before birth. Their message is stark and bleak. It is: “Let’s ignore the fact that these disabled babies are human beings, with an equal right to exist. Let’s reclassify them and call them foetal anomalies. Let’s go one better and call them serious foetal anomalies. What does it matter that the Department of Health collects no data centrally on so-called fatal foetal anomalies, as long as we can use the term to dehumanise?” Well this foetal anomaly, this proud Member of your Lordships’ House, is having none of it. I utterly reject this medical mindset that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I begged no one for my equality. I know I have as much right as anyone to be alive.
However, should the noble Lord decide not to withdraw his amendment and instead to divide the House, I humbly ask that all noble Lords stand with me and people with congenital disabilities and affirm that we are all equal.
Consideration on Report adjourned.
House adjourned at 3 pm
Full debate at:
The Report Stage of the Bill must now continue in the Lords when time is allocated by the Government.
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The Shinkwin Bill on equality, discrimination, disability and abortion law has been given a Second Reading
Lord (Kevin) Shinkwin and a supporter of his Bill at Westminster.
To watch the debate go to:
http://www.parliamentlive.tv/Event/Index/3c04ea69-45e3-440e-93a6-07976ac9e1bd
Also, to see this speech(below) on You Tube:
https://youtu.be/At1ZHafjFpg
and Janet Fearns scorn-not-his-simplicity
11.52 am October 21st 2016
Lord Alton of Liverpool (CB)
My Lords, I support the Abortion (Disability Equality) Bill of the noble Lord, Lord Shinkwin, and congratulate him on bringing this timely piece of legislation to your Lordships’ House and on the eloquent way in which he introduced it. It is hard to overstate my admiration for his courage, his compassion and his integrity.
I hope noble Lords will forgive me for saying so, but I cannot help thinking that if the noble Lord’s Bill had set out to facilitate the assisted suicide of disabled people, it would have been on every national news bulletin. But because it seeks to end the taking of the life of a viable disabled baby, it is being treated very differently. That unwillingness to treat ethical issues with equal respect and impartiality is a disturbing sign of the times—but not as disturbing as the issues of equality, discrimination and the very right to life itself raised by the noble Lord’s important Bill
As the noble Lord observed, our legislation currently affords unborn disabled babies significantly less protection than that which is afforded those who are able bodied. Paradoxically, we will campaign and raise our voices for wheelchair ramps to be placed on public buildings but fail to uphold the innate right to life itself of the disabled person who uses that wheelchair.
Although the able bodied may be aborted up to 24 weeks, those who are disabled may be aborted up to birth. This inevitably implies that these unborn disabled babies are, as the noble Lord said, significantly less valuable than those who are able bodied. What message does this convey about the human dignity and the value—or, rather, the lack of value—of disability in society generally? As the law stands, it is a legal arrangement that invites and encourages discrimination—which is why, in 1990, I spoke and voted against it in another place when this provision was made.
At the time, I was given significant support by a woman called Ellen Wilkie, who had Duchenne muscular dystrophy. In her short 31 years, Ellen gained an honours degree in classics from Bristol University and was a published poet, worker, author, actress, radio and television presenter, journalist and musician. Her parents had been encouraged to abort her but had refused. I particularly commend her autobiography, A Pocketful of Dynamite, to anyone who contests her assertion that, “No one can say what a disabled person will be capable of”.
The arguments that Ellen Wilkie put at that time were set aside by Members of another place, and that legislation was incorporated into statute. It has had a very negative effect on the attitudes that people have. It is a throwback to a time when society had remarkably different attitudes to the inclusion and contribution of people with disabilities. We have moved on as a society and it is time that the law moved on, too. The Disability Rights Commission—now the Equality and Human Rights Commission—has, rightly, argued that this provision,
“is offensive to many people; it reinforces negative stereotypes of disability and … is incompatible with valuing disability and non-disability equally”.
As the We’re All Equal campaign has pointed out, statute insists that we must not discriminate against people with disabilities, but the 1990 provision runs contrary to both the spirit and the letter of the law.
The net effect of the noble Lord’s Bill would be that the 24-week time limit would apply to all babies, regardless of disability—it has no effect on other grounds detailed in the 1967 Abortion Act. It is hardly a secret that I oppose not just the time limits in our current legislation but the provisions that have led to 8 million nascent lives being prematurely ended in the United Kingdom. But this Bill is not about that; it is solely about a eugenic law that flies in the face of our usual protestations and tips the balance in favour of equality and against discrimination.
That the noble Lord’s Bill is desperately needed may be graphically seen in the abortion statistics provided by the department, which the noble Lord referred to. He specifically referred to the situation of people with Down’s syndrome. We live in a country where around 90% of all Down’s syndrome babies are routinely aborted. I know that I am not alone in having been deeply affected by Sally Phillips’s recent documentary, “A World Without Downs Syndrome?”, and the subsequent debate which the programme inspired. Rosa Monckton, mother of Domenica, born with Down’s, remarked that,
“Sally is entirely right about the relentless pressure to persuade mothers to ‘give up and start again’. I hate to think of what our family would have missed if we had gone down that path”.
What does it say about us and our society when amniocentesis and other tests are used as part of search and destroy mission with barely a murmur of dissent? Sally Phillips brilliantly highlighted the appalling pressure put upon mothers who receive a pre-natal diagnosis to abort their babies, but it also revealed from her own experience that living with Down’s is not a death sentence or incompatible with life. Paradoxically, in seeking to eradicate these wonderful individuals from the human race, it suggests that it is we who have the problem, not them. What does it say to the survivors—those who have been inconsiderate enough to avoid the perfection test and have somehow managed to slip through the net?
The noble Lord’s Bill challenges these negative stereotypes, but it also challenges casual attitudes to the law and to the requirement to keep scrupulous records. In 2014, a Department of Health review found evidence that there is significant underreporting of the number of abortions for some foetal disabilities. I hope that when the noble Baroness comes to reply to the debate, she will say what is going to be done to rectify this. I also have another question, arising from the remarks of the noble Lord, Lord Shinkwin. Although we were warned about it in the debates in 1990, not least by Professor John Finnis, who was rubbished at the time and accused of scaremongering, very few people realised that the provision would lead to abortion on babies with, as the noble Lord said, rectifiable disabilities such as cleft palate and hare-lip. What does the Minister have to say about that?
The shocking discrimination that we are witnessing through both what our law says and what it facilitates has devastating practical implications. I will conclude my remarks by returning to the pressures exerted on parents. The United Kingdom’s initial report on the UN Convention on the Rights of Persons with Disabilities said:
“Concerns were expressed around the approach to abortion in the UK, where disabled people have suggested a bias towards termination of pregnancies if a child is likely to be disabled”.
This view was backed up by evidence submitted to the 2013 independent parliamentary inquiry, which heard from a number of parents who said that, when it became apparent that their baby was disabled, their doctors expected them to abort. Among a number of contributions that I read, one parent said that her doctor became,
“short-tempered and abrupt with me because he clearly didn’t agree with my decision”.
Another said she felt pressured into an abortion and reported that her doctor,
“threatened that all medical help would be denied”.
The inquiry also heard from parents with disabled children. A representative of the British Academy of Childhood Disability said:
“Parents I have spoken to have said that Doctors treating their children with Down’s Syndrome for example (for heart and other conditions post natal) criticised them for not having abortions, saying their children will not have a good life”.
A parent, meanwhile, said:
“Parents who learn of their baby’s disability after birth are sometimes told that it’s too bad they didn’t find out earlier so they could have ‘taken care of it’”.
Another parent said:
“I have heard views expressed that suggest my child is seen as a drain on resources. A common view is that it was not fair on my other child to bring a disabled child into the world”.
When she comes to reply, I hope that the Minister will reflect for a little while on the department’s attitude to some of the alternatives to this that are available. I have read about and seen some of the extraordinary in utero operations that can take place now on disabilities such as spina bifida, and I have also read the work of Professor KJS Anand, one of the world’s leading experts on foetal pain, whose says that,
“it seems prudent to avoid pain during gestation”,
because of the danger that the unborn child will experience pain. Noble Lords should recall that babies have been born and lived from 23 weeks’ gestation, and this provision permits the ending of a life right up to and even during birth. What pain must it experience in this life-ending procedure?
All of this is very sad, so I am extraordinarily grateful to the noble Lord, Lord Shinkwin, for bringing forward his important equalities Bill. It is specific in its intention and specifically targeted at the issue of discrimination and inequality. I urge your Lordships’ House to give it your support at Second Reading today.
12.03 pm
The Bill Received A Second Reading.
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Doctors Operate In The Womb To save A Life….
http://www.itv.com/news/2016-10-24/baby-born-twice-doing-well-after-miracle-surgery/
“It was an easy decision. We wanted to give her life.”
A baby has been ‘born twice’ after doctors had to take her out of the womb to remove a tumour that was threatening her life.
Lynlee Boemer’s only chance of survival was a risky fetal surgery which involved cutting her out of her mother prematurely, and then putting her back in so that she could be carried full term.
LynLee’s mother Margaret said she was told at 16 weeks that her baby was suffering from a rare birth defect known as sacrococcygeal teratoma – a tumor that grows from a baby’s tailbone…..
When Mrs Boemer was 23 weeks and five days pregnant she was taken into the operating theatre.
Mrs Boemer told CNN: “LynLee didn’t have much of a chance. At 23 weeks, the tumour was shutting her heart down and causing her to go into cardiac failure, so it was a choice of allowing the tumour to take over her body or giving her a chance at life.
‘It was an easy decision for us. We wanted to give her life.”
