Abortion (Disability Equality) Bill [HL]

Lord Shinkwin Excerpts

2nd reading (Hansard): House of Lords
Friday 21st October 2016 Lords Chamber

Moved by

[Lord Shinkwin]

That the Bill be read a second time.

[Lord Shinkwin (Con)]

My Lords, as someone with a disability, it gives me immense pride to present to your Lordships’ House a Bill about disability rights and the fundamental principle of equality under the law. Noble Lords have treated me with nothing but respect as an equal since my introduction to your Lordships’ House just under a year ago. The reason for my Bill is that in respect to disability before birth the law does not recognise or accept that equality.

I wonder if I could extend an invitation to noble Lords to join me briefly on a journey, to put themselves in my place and to view the issues under discussion from a disabled person’s perspective. From this disabled person’s perspective, there is a stark anomaly, an inconsistency in the law, whereby discrimination on grounds of disability is both prohibited in law after birth yet, confusingly, actually enshrined in law at the very point at which the discrimination begins, at source, before birth. How do I know it is enshrined in law and that disability discrimination begins before birth? I know because the law says so. It is there in black and white in Section 1(1) of the Abortion Act 1967, which gives disability as one of the grounds for abortion:

“if two registered medical practitioners are of the opinion, formed in good faith ... that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.

So by rights I should not be here. I should be dead. Indeed, more than that, according to the eugenic screening programme of our Department of Health, I would be better off dead because of serious handicap, to use the outdated terminology of the Act. I regard my Private Member’s Bill as a modest, reasonable and logical correction of that anomaly in the law to bring it into line with the thrust and spirit of existing disability discrimination and equality legislation.

Before I go into the detail of why I regard my Bill as a modest, reasonable and logical correction of that anomaly, I would like to place my Bill in context. I do so in the context of gratitude to the various clinicians who have treated me over the years without any discrimination, especially Hanus Weisl, a wonderful Jewish orthopaedic surgeon who rebuilt his life after a narrow escape from Nazi-occupied Prague in 1939 and rebuilt me as a child with brittle bones more times than I care to remember—how I wish I could thank him today—to my family and friends for only ever supporting me and never discriminating against me; to our Holy Mother for her non-discriminatory, sustaining love; and to your Lordships’ House for its tireless work to advance disabled people’s rights, as demonstrated by the pivotal role it played in securing the Disability Discrimination Act 21 years ago and the Equality Act, and for the authoritative report of the Select Committee, The Equality Act 2010: The Impact on Disabled People. In fact, I hope the new Minister for Disabled People, Penny Mordaunt, will look at its pragmatic recommendations again.

The second context in which my Bill must be placed is historical. I cannot seriously believe that noble Lords could ever have intended any law to discriminate to the eugenic extent that Section 1(1)(d) of the Abortion Act 1967 permits and of which a particular regime of the 1930s and 1940s would heartily approve.

Moreover, I struggle to understand how such eugenics can somehow be in any way less abhorrent 80 years later, especially given the supposed societal and attitudinal changes that have transpired since and the marvellous medical advances that have been made in that time. I also cannot believe that noble Lords could have intended that laws governing or giving rise to disability discrimination should be moving, in their effects, in such conflicting and contradictory directions as equality law is on the one hand and abortion law is on the other.

The inconsistency would be farcical if its impact were not so tragic. This is perhaps highlighted by how ridiculous it is that I should be a Member of your Lordships’ House, for whom a Health Minister recently professed in an email to me, no doubt sincerely, to have the greatest respect, yet were a younger, unborn version of me to be detected in the womb today, Section 1(1)(d) of the Act and his department’s search-and-destroy approach to screening would make me a prime candidate for abortion. How is that consistent with respect or equality?

It is in the context of such contradiction that I regard my Bill as modest, reasonable and logical. The logic I have just explained. I believe it to be modest and reasonable because its scope is so limited. This is borne out by the legal advice I have received by Hugh Preston QC that the practical effect of my Bill would be that, where there is a substantial risk of serious handicap, the mother’s ability to abort would be governed by the same criteria that apply in the case of any other foetus. Where the foetal handicap is such as to present a risk to the mother’s life or a risk of serious permanent damage to her, the mother would still be allowed by law to abort right up to birth.

Moreover, where the risk of injury to the mother is not so grave as to meet these criteria, the question of abortion would be governed by Section (1)(1)(a) of the Abortion Act—that is, abortion is permitted subject to there being a risk to the physical or mental health of the mother or her existing children greater than the risk of continuing with the pregnancy. In practice, in circumstances where a mother has concluded that she does wish to have an abortion, having decided that she does not wish to have a seriously handicapped child—to use the outdated wording of the Act—the advice I have been given is that one anticipates that this relatively low threshold would not be difficult to overcome, as indeed is the case generally for foetuses presenting no risk of serious handicap.

It follows that the practical effect of abolishing Section 1(1)(d) of the Act, which is what my Bill would do, is that any abortions by reason of disability would need to be carried out within the first 24 weeks, subject to the other sections that I have already mentioned—for example, where there is a risk of serious permanent damage to the mother or her life is at risk, in which case they will remain legally permissible until birth.

What is the legal difference between my Bill and the status quo? The difference in practice is modest; the difference in principle is huge. If a woman chose indirectly to discriminate on grounds of disability, the law would allow her to do so up to 24 weeks, but the principle of disability discrimination itself would no longer be enshrined in law, as I understand it.

Each of us has made different personal journeys to our Lordships’ House, but I submit that each of us has made that same essential journey through life: adulthood, childhood, infancy and before that the state of being an unborn baby, safe and secure in our mother’s womb. Only that is precisely the point, because for unborn babies whose disability is detected, a mother’s womb has become an increasingly dangerous place. I will share a few statistics with noble Lords. There were 230 terminations after 24 weeks on grounds of disability in 2015, and a 56% increase in the number of terminations on grounds of disability after 24 weeks over the last five years, between 2010 and 2015. There has been a 271% increase in the number of terminations on grounds of disability after 24 weeks over the last 20 years, 1995 to 2015. There were 3,213 terminations on grounds of disability in 2015, and a 68% increase in the number of terminations on grounds of disability over the last 10 years, 2005 to 2015. There were 689 terminations for Down’s syndrome alone in 2015 and a 43% increase in the number of terminations for Down’s syndrome over the last five years, 2010 to 2015. There was a 143% increase in the number of terminations for Down’s syndrome over the last 20 years, 1995 to 2015. Perhaps almost as chilling, there were 11 terminations for cleft lip or palate in 2015—an easily surgically rectifiable condition. I find the contrast between the 0.3% decline over the last decade in the number of overall abortions and the rise in the number of abortions on unborn babies detected with a disability alarming and deeply offensive.

As a disabled person, I am a prime candidate for abortion on the grounds of disability. I admit that I would like to say to the eugenicists in the Department of Health and those who obviously fail to appreciate the enormity of what is being perpetrated in our name:

“How dare you? How dare you wipe us out as mere conditions?”,

as the journalist Janice Turner so poignantly, if sadly approvingly, put it in the Times recently. My message to Janice Turner and all those who share such views is this: I am your equal. I will not be defined by my disability. I will be defined by who I am and by my contribution to your Lordships’ House and public service.

In conclusion, I know why they dare. They dare because they can, because discrimination in the form of abortion on grounds of disability is both lethal and legal, enshrined in law by Parliament and by your Lordships’ House. They dare not only because Parliament has legalised disability discrimination before birth or even simply legitimised it. No, we have gone one better than that and have allowed it to be normalised. I suggest that, collectively, we are in denial about the consequences of the choices we have made. But to deny equality here is inconsistent, incompatible and irreconcilable with the wonderful work that your Lordships’ House has done over many years to advance disability rights and equality. It is within that noble tradition of equality legislation that my Bill sits, and that is why I hope noble Lords will agree that my modest, logical and reasonable Bill deserves support and, crucially, government time in order that this corrosive, unjust and deeply discriminatory anomaly in the law is corrected, and equality is upheld in a society that is truly for everyone. I beg to move.

--- Later in debate ---

[Lord Shinkwin]

My Lords, I thank all those who have most kindly contributed to this debate for their constructive comments. Mindful that time is pressing, I hope that noble Lords who have contributed will excuse me if I am brief in my closing remarks.

I thank the noble Lord, Lord Alton, for drawing attention to the need for the media to pay more attention to ethical issues and treat them with a higher priority. I also agree that the legislation under discussion is a throwback to times that are, I am happy to say, long passed. We have moved on as a society and it is time that the law and Parliament catch up with that and challenge negative stereotypes.

I thank my noble friend Lady Nicholson for agreeing with me that the attitude of society has changed and that everyone is equal. I agree with her that it does seem rather jarring, if not hypocritical, to celebrate as a society the amazing achievements of our Paralympians and then, as I alluded to in my opening remarks, to tell them in effect that, by law, we would have killed you if we had had the chance and we believe that you would be better off dead. I am afraid that although none of us may articulate such thoughts, the subtext of the existing law signals exactly that message.

I thank the right reverend Prelate for his supportive remarks. I emphasise, with him, that this is not about the ethics of abortion. Indeed, it is perfectly true that it would be unlikely that the number of abortions would markedly decrease. But, as he rightly said, the principle of disability equality is essential if society wants to celebrate people with disabilities, as they did so recently in Trafalgar Square.

Moving quickly on to the remarks of my noble friend Lady Stroud, I think she made a very pertinent point when she said that most people—most Members of your Lordships’ House—are surprised to discover that not only is disability grounds for abortion, it is grounds for abortion up until birth. I hear the comments made by the noble Baronesses, Lady Hayter and Lady Tonge, but, with respect, I must say that it is important that we take on board the points made by my noble friend Lady Stroud about the pressure exerted on women by clinicians, nursing staff and legislation—by the societal norms constructed by the legislation passed by your Lordships’ House. It is the crucial importance of attitudes.

With regard to the remarks of the noble Baroness, Lady Tonge, I would simply say that either we believe in equality or we do not. George Orwell helpfully pointed out that no one can be more equal than others. That is exactly the point about the need for consistency in equality. I simply thank the noble Baroness for the overpowering clarity of her views.

On the remarks of my noble friend Lord Bridgeman, I cannot help but agree with his appropriate description of how the interpretation of the law passed by your Lordships’ House has inadvertently resulted in abortion on grounds of disability by stealth, and that that was not what this House intended.

I thank my noble friend Lord Elton for his supportive remarks. I agreed with the noble Baroness, Lady Hayter, when she opened her remarks by drawing attention to the contribution of disabled people. I would like to believe that I make a contribution to the business of your Lordships’ House; I certainly attempt to. But perhaps I could leave her with this point. If the law is not changed, how many Members of your Lordships’ House—perhaps this is even more pertinent in light of the debate that immediately preceded this one—do your Lordships think would be in this place in 40 years’ time if they had had an anomaly or disability detected before birth? I think we all know the answer to that question. The noble Baroness also mentioned the hurdles that disabled people face. I would simply say this to her: the biggest hurdle to society being truly for everyone is attitudes.

My noble friend the Minister restated the Government’s position, which I respectfully hope will change. I have to say that I am serving notice on Her Majesty’s Government that, should they proceed to introduce the new non-invasive prenatal test without the Health Secretary having met with me and with people with Down’s syndrome, their families and representatives to discuss their grave concerns—a meeting I requested as long ago as 8 March this year—I will be very seriously concerned. I urge my Government and my party not to disown their own Disability Discrimination Act and their commitment to ensuring that disabled people are heard on all the critical issues that affect them, which is consistent with the spirit of that Act.

I conclude by thanking all those who have contributed to this important debate and I ask the House to give the Bill a Second Reading.

Bill read a second time and committed to a Committee of the Whole House.

Abortion (Disability Equality) Bill [HL]

Lord Shinkwin Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 27th January 2017 Lords Chamber

[Lord O'Shaughnessy]

We are of course supportive of the Equality Act.

[Lord Shinkwin (Con)]

My Lords, I thank all noble Lords who have spoken in support of my Bill, and I thank sincerely and in good faith the noble Baroness, Lady Massey of Darwen, for her amendment, which I not only accept but welcome as a logical extension to a logical Bill. It is a Bill that brings the law as it currently applies to disability before birth into line with how your Lordships’ House has already ensured that the law applies to disability after birth.

The amendment is about the impact of my Bill. But it is a simple, wonderful truth that I owe your Lordships’ House so much because of the impact of legislation that it has already passed. Without your Lordships’ House, a commitment to disability equality would never have been enshrined in law. Noble Lords will know that noble giants such as Jack Ashley and Alf Morris, with both of whom I had the privilege of working and whose spirits I invoke today, led the fight to outlaw disability discrimination. All my Bill does is to carry on their noble work, because it would allow us to outlaw disability discrimination where it begins—at source before birth. It is simply unfinished business. The amendment would help because it would measure the Bill’s impact on disabled children, their families and carers, and on the provision of support services.

When I think about the incredible role that strong women—women such as my own mother—play in the lives of their disabled children, anything that supports families and carers after birth and, crucially, on diagnosis before birth is welcome. Moreover, it stands to reason that such support services, be they provided by the state, charities, parents’ organisations or disabled people’s organisations, should be included in an impact review so that people can learn and disseminate best practice and, where necessary, ensure that improvements are made.

Abortion (Disability Equality) Bill [HL]

Lord Shinkwin Excerpts

Report stage (Hansard): House of Lords
Friday 24th February 2017 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health (Lord O'Shaughnessy) (Con)]

My Lords, I start by joining other noble Lords in congratulating my noble friend Lord Shinkwin on steering the Bill through its Lords stages so far and on his engagement with noble Lords on the Bill. It raises important and sensitive issues about disability rights and abortion and it is quite right and proper that these are discussed and scrutinised at length by your Lordships. I am also grateful to the noble Lord, Lord Winston, for his amendment and for the scientific authority which he brings to the issues. I commend all noble Lords for the quality of the debate we have had on this amendment.

As I set out in Committee, the issue of abortion is a matter of conscience for noble Lords, as the noble Lord, Lord Alton, and the noble Baroness, Lady Massey, reminded us. The decisions that we take on this transcend the normal political or partisan divides and it is for that reason that the Government have taken and continue to take a neutral position on this issue and on the Bill. The Government do not, therefore, have a position on the amendment of the noble Lord, Lord Winston, or on those that will follow in the House today. I do not intend to comment on subsequent amendments unless there are specific points that noble Lords wish to put directly to me and to which I can respond.

I do, however, wish to make one point that I believe is germane to the issues under discussion in this amendment and, indeed, in the Bill in general, and that is that it is vital that we have accurate statistics on and evidence for the reasons for termination of pregnancy. Officials are working directly with hospital staff to improve reporting on abortions. We have also reminded all doctors involved in abortion care of their legal responsibility under the Abortion Act 1967 and the Abortion Regulations 1991 to submit form HSA4, the abortion notification form, within 14 days of a termination.

Overall, between 2013 and 2015, there was an 18% increase in the number of reported ground E abortions. While we obviously cannot claim that this increase is solely the result of increased reporting of these abortions, as opposed to increased instances, we do know that this is the case in some of the units that officials have been working directly with. The department will continue to monitor carefully levels of underreporting of abortions for foetal abnormality.

The noble Baroness, Lady Stroud, asked about palliative care for babies. I fear that I do not have that information to hand but I will be happy to write to her on the issue.

[Lord Shinkwin]

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 the 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.