Abortion (Disability Equality) Bill [HL]
Friday 21st October 2016
(7 years, 10 months ago)
Lords ChamberAbortion (Disability Equality) Bill [HL] 2016-17 View all Abortion (Disability Equality) Bill [HL] 2016-17 Debates Read Hansard Text Read Debate Ministerial Extracts
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screening programme of our Department of Health, I would be better off dead because of serious handicap, to use the outdated terminology of the Act.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.
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.
Baroness Nicholson of Winterbourne (Con)
It is with the greatest possible pleasure that I rise to support the Bill proposed by the noble Lord, Lord Shinkwin. It is a significant step forward in logical thinking and in the investigation of what we as a society feel about handicap, about handicapped people, about life ownership and about who should make the judgment on whether a person should live or die. Considered internationally, it is a topic and issue on which there is the widest possible variation, as there is with capital punishment. Curiously, this is exactly what this is—a form of capital punishment. It is a form of disallowing by decree the life of someone who is not the person in question.
I am aware immediately that under United Kingdom law a foetus has no personality. This is not the same as in some of our EU member state partners. In Germany, for example, the foetus has a right to life as a personality from the moment of conception. Even in Germany, a would-be mother, a pregnant lady, can have an abortion at any time up to 12 weeks, with nothing except a consultation with a medical professional and three days’ waiting time—but after 12 weeks nothing is allowed, unless the health of the mother is severely compromised. If I recall correctly, considerably earlier legislation in the United Kingdom gave the health of the mother as the key to the question of whether there should be an abortion on any grounds at all. It seems that we switched considerably when it was deemed that external judgments, including that of the mother but mainly those of medical professionals, on the health of the foetus itself, became the judgmental point, rather than the health of the mother.
A major or minor handicap is a difficult issue to determine. But, as the noble Lords, Lord Shinkwin and Lord Alton, have already declared and pointed out, some of the handicaps that were once deemed major are not so today, because there have been medical advances. There are ways in which either they can be ameliorated or the person can be adequately supported. We can look some of the ways in which mental handicap has been supported, for example with special assistance in schools. One hundred years ago it might not have been possible for someone with a certain level of intelligence to be educated and have a fulfilling life. Now, with special teaching and assistance and the attitude of society towards children with a mental handicap, it is amazing how flourishing those children and adults can become.
I myself feel very powerfully that the focus on Down’s syndrome as an impossible handicap, and the idea that the person with the handicap should be discarded, are intolerable. On the other hand, I would have great difficulty in supporting the birth, if the condition was known, of a foetus with Tay-Sachs disease, when the pain, grief and suffering is eliminated after about two and a half years, but the time up to that is agonising for the baby—and, of course, very difficult for the parents.
One has to think about the major issue that we are looking at with this Bill. The noble Lord, Lord Shinkwin, has based his argument on equality and equal opportunity. Everyone who is disabled is just as important and valuable as anyone else. I speak as someone who happens to be profoundly disabled from an in utero problem. I would very much have avoided being discarded before birth if I had had any opportunity to comment on it—but the problem that we are discussing involves making judgments on another potential human being who is not there to make the judgment themselves.
The attitude of society towards the mother is a critical issue. Perhaps we are guilty of hypocrisy here, because we claim that we have a wonderful attitude towards those who are disabled—that it is absolutely perfect. Did not we do the Paralympics? Were we not number one? Were we not special British people with a handicap—Paralympic brilliance? Yet here we are discussing the discarding almost at the moment of birth a potentially valuable human being who might go on to win a gold medal in the Paralympics. Is not there a hypocrisy here that needs significantly to be addressed and discussed? This is why I am such a keen supporter of the Bill, because the noble Lord, Lord Shinkwin, is tackling that very hypocrisy.
On the one hand, we are very proud of ourselves. Indeed, this House recently published a report on disability. I have to question whether it is fulfilling the goals and activities of that disability report, which was welcomed and lauded and supposed to be so wonderful. Are we doing it? I suggest that we not, in fact. It is time that we woke up to the fact that we are hypocrites on disability. This is a very clear example. I am referring not just to the House of Lords report, which I am criticising a little bit in terms of its implementation here, because it does not happen. The great hypocrisy is saying that we, the British, are special on handicap and are in advance of everybody else. Here we are with the Paralympics: those poor old Brazilians could not match us—not one tiny scrap, we think. Yet actually we are making sure that we have the fewest possible supposedly disabled citizens in our society.
Looking at some of the EU member states or across the globe, we find a vast disparity of views. I do not suggest that this is a topic that is very easy to discuss or one on which it is very easy to reach a solution, but I ask that we are honest with ourselves. While suggesting that we have the perfect Equality Act, that we are absolutely wonderful and that we are doing everything for the disabled, we are, on the other hand, allowing ourselves to discard all disabled people before they are actually born. We need to have a very careful look at the quality of life for those who are disabled and ask disabled people themselves why they find life so happy, exciting and worth having that they wish to still be here.
I was interested the other day to attend a round table with seven of the most important disabled societies in the UK. Disability and disabled people were being discussed and rather the same attitude prevailed. As I looked around the table, I could find only one person in that vast discussion who was actually disabled. I speak here as someone who, for a decade or so, chaired and ran ADAPT, promoting access for disabled people to arts premises and public libraries. We were the body responsible for adapting, to a certain extent, the House of Commons—and, sadly to a lesser extent, the House of Lords. Going around the UK and getting grade 1 and grade 2 listed buildings adapted was a tremendous experience and I was glad that we managed to do so much. However, it is interesting that, even today, the disabled are talked about but are not the ones who are giving the evidence.
It is with the greatest possible pleasure that I hope my few remarks will convince noble Lords that this Bill deserves not just full support but a wholehearted and wide societal discussion. This is our hypocrisy and it is something which noble Lords can very well address and resolve.
The Lord Bishop of Bristol
My Lords, I too am grateful to the noble Lord, Lord Shinkwin, for introducing this Bill. I understand that its focus is the principle of disability equality, not some underhand attempt to limit women’s access to abortion services. Noble Lords will, of course, have a variety of opinions on the ethics of abortion, but that is not, in principle, the focus of the Bill. It needs to be said that, in general, historically and indeed today, churches and other faith groups have always maintained a cautious approach to how the rights of women and the rights of the unborn child can somehow be maintained without, we hope, falling in to those who reside at the extremes of arguments around ethics on both sides of this debate.
Our debate today is effectively restricted to whether we ought to remove from the 1967 legislation one ground for permitting abortions to take place—specifically, 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”.
Given the nature of the remaining grounds for abortion, it is unlikely—as the noble Lord, Lord Shinkwin, has implied—that if this Bill were to become law, the numbers of terminations of pregnancy would significantly decrease. The Department of Health, in its commentary on 2015 abortion statistics, implied that unquantified, but notable, numbers of abortions where foetal abnormalities were present were conducted on other grounds, most probably that of injury to the mental health of the pregnant woman. It is reasonable, therefore, to conjecture that if Section 1(1)(d) were to be removed from the Act, many such pregnancies could and would still be terminated under other existing provisions. That might be a matter for either reassurance or regret for noble Lords, but that particular discussion lies beyond our remit.
Why then do we seek to amend the Abortion Act? The answer is that the principle of disability equality is essential. It is essential for the welfare of individuals living with disability and it is equally essential for a society that wishes not only to protect but to celebrate the lives of those with disabilities. Many of us looked at our television screens just days ago and saw the joy of the crowd and of athletes, both able and disabled, in celebration of their achievements. There is something profoundly worrying in our current contradictory stance, which says that people living with disability are valued, respected and cherished, but that disability, in and of itself, represents a valid ground for abortion. In the end, there is a world of difference between an abortion taking place because a diagnosis of foetal disability adversely affects the mental health of a pregnant woman, and stating that foetal disability is, in and of itself, a ground for abortion.
As other noble Lords have mentioned, by way of example I should like to pursue one pertinent area further—that of the Down’s syndrome community. That there are challenges to be met in caring for a child with Down’s syndrome is undeniable. Without in any way seeking to minimise the impact of a diagnosis for Down’s syndrome on parents, my experience as a father of five is that there are challenges in caring for all children. However, neither would I want to minimise the joy that many parents receive from sharing their lives with Down’s syndrome children. The recent TV programme made by Sally Phillips made that point very clearly. For those noble Lords who are, like me, addicts of the TED talks, there is a very compelling talk on that website by a young disability rights campaigner, Karen Gaffney, who has Down’s syndrome. She is an Olympic gold medal-winning swimmer and has swum 16 times across San Francisco Bay—a feat which, I gather, none of the inhabitants of Alcatraz successfully managed.
Not only children but adolescents and adults with Down’s syndrome live valued and valuable lives, contributing greatly to the welfare of those around them. All of this is undermined by the continued existence on our statute book of a law that, in effect, states that Down’s syndrome is a ground for abortion. The current debate with regard to non-invasive prenatal testing, recently the subject of a consultation by the Nuffield Council on Bioethics, brings a new urgency to this issue. NIPT screens for genetic conditions such as Down’s syndrome can now be carried out by means of a simple blood test from the 10th week of pregnancy. This procedure is more accurate than the previously available early screening tests and does not carry the risk of miscarriage because of its invasive nature. If, either through the NHS or commercial companies, it becomes routine for pregnant women to undergo this form of screening, it could have extreme consequences, not only for the numbers of Down’s syndrome children to be born but for society’s attitudes, not just to those who are born with Down’s syndrome but to disabled people in general.
I congratulate the noble Lord, Lord Shinkwin, on bringing this issue to the attention of the House and I hope that, regardless of our no doubt diverse views on the ethics of abortion, we can unite to give the Bill a Second Reading in the interests of disability equality.
Baroness Stroud (Con)
My Lords, I am pleased to support the Abortion (Disability Equality) Bill and I commend my noble friend Lord Shinkwin for bringing it forward. As a parent and a friend to mothers who have disabled children, I appreciate that this is a hugely difficult and sensitive subject, whichever way one approaches it. However, the arguments about the value, contribution and importance of people with disabilities are just too important for me to remain silent.
The Bill introduced by my noble friend Lord Shinkwin accomplishes two very important objectives. First, it restores equality to the face of our legislation, as set out in the Abortion Act 1967. The issue of Section 1(1)(d) being discriminatory was indeed raised, as the noble Lord, Lord Alton, said, by the Disability Rights Commission soon after its creation in August 2001, when it stated that,
“it reinforces negative stereotypes of disability; and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally ... In common with a wide range of disability and other organisations, the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally”.
When I first found that that clause existed in the Abortion Act, I was really surprised. I struggled to understand how a British society that seeks to value disabled people in every way and is a world leader on the issue of disability equality could behave so differently in its approach to a disabled baby in the womb, allowing abortion up to birth for disability. For every other situation, it is permitted only up to 24 weeks, unless the life of the mother is at risk.
In some ways even more troubling, however, is that disability, which is a protected characteristic in UK law, should be a basis for abortion at all. Lest anyone should be tempted to think that one can be discriminatory in a confined abortion context and not have it spill out into life beyond the womb, the evidence received by the Parliamentary Inquiry into Abortion on the Grounds of Disability in 2013 is less than reassuring. The representative of the British Academy of Childhood Disability stated:
“Parents I have spoken to have said that Doctors treating their children with Down’s Syndrome”,
as we have already heard,
“criticised them for not having abortions, saying their children will not have a good life”.
Another said:
“I have already come across people who view my choice to have my child as detrimental to the rest of society”.
That has certainly been my experience, as one of my friends went through this process. There are mutterings at the school gates, and people asking, “Why did they choose to have that baby?” gets into our attitude as a society. All those accounts are available in the inquiry’s report, which is in the House of Lords Library. I am afraid that this is an inevitable consequence of the law endorsing the idea that abortion on the grounds of disability is perfectly acceptable.
The second crucial objective that the Bill fulfils relates very specifically to the consulting room. One way in which the message of our current legislation is communicated is through those charged with responsibility for its implementation. If disability were not a ground for abortion, doctors would not mention it. However, the fact that it is means that doctors will, quite properly, inform a mother carrying a child with a disability that she should or could have an abortion. However, a significant number of parents say that that puts very real pressure on them to have an abortion. Again, the inquiry into abortion on the grounds of disability heard some very concerning evidence. One mother said that she felt she was treated differently because she was carrying a disabled baby. Another said that she experienced some disdain from medical professionals for deciding to keep her baby.
Indeed, you can see the effect of the law on decision-making and the approach to abortion by looking at the latest statistics. Between 2005 and 2015 the abortion rate in Great Britain, as we have heard, remained largely constant, decreasing very slightly by 0.3%, but between 2005 and 2015 the rate for abortion on grounds of disability up to birth rose by 68%. If this were any other group with any other protected characteristic, we would be seriously concerned.
The contrast between approaches to abortion of the able-bodied and abortion of the disabled is deeply concerning. It provides yet another reason why the Bill of my noble friend Lord Shinkwin should become law. Of course, the Bill will not mean that if a mother discovers at any point up to her last 21-week scan that her baby is disabled, the option of abortion will not still be open to her up to 24 weeks. It would obviously remain so.
As we have heard, that point was recently confirmed through a legal opinion issued by Hugh Preston QC on the Shinkwin Bill. It states that it is,
“succinct and limited in its scope. If enacted, it would remove s. 1(1)(d) of the Act completely. It follows that the practical effect of abolishing s. 1(1)(d) of the Act, is that any abortions by reason of disability will need to be carried out within the first 24 weeks subject to s. 1(1)(a) of the Act, unless there is a risk of serious permanent damage to the mother, in which case they will remain permissible until birth. Thus, abortions by reason of disability will remain permissible, but subject to the same safeguards as apply in any other case”.
Crucially, however, the provision of the Bill expressly removes discrimination from the face of our legislation.
Our abortion Act would send out the message that disabled lives are worthy of protection equal to that afforded to able-bodied lives. This legislation is overdue and I very much hope that the Government will take their equalities responsibilities in this matter seriously and support the Bill.
Baroness Tonge (Ind LD)
My Lords, debates about the availability of abortion are always harrowing, whatever side of the argument we take, and I congratulate the noble Lord, Lord Shinkwin, on a brilliant and very moving speech. This debate is doubly difficult because I feel that I am under pressure to say what the noble Lord wants to hear. No one can deny the amazing contribution that disabled people make to our lives in this country, and the insight and experience that they bring to us, even here in the House of Lords. That contribution is enormous.
However, I must give the other point of view. I must speak from the experience I have had as a GP and family planning doctor working with mothers, babies and children for most of my professional life, having, over many years, to advise and counsel women who find themselves pregnant in circumstances in which they cannot contemplate having a child to rear. Their voice must be heard too and I beg noble Lords to listen.
It is difficult enough when a woman has to make a decision early on in pregnancy, not knowing the development—normal or otherwise—of her foetus. It is much more difficult when a woman is carrying a foetus that has been shown to have a severe disability. Through no fault of the mother, this is often not definitely diagnosed until the later stages of pregnancy—hence the exceptions made in existing legislation. That is currently the problem: often the diagnosis cannot be confirmed and the decision cannot be made before 24 weeks.
In my experience, it is untrue and cruel to suggest that women who, in the later stages of pregnancy, undergo abortion because of foetal abnormality are doing it simply because they want a “perfect baby” and that they want to discriminate against disabled people. They have to take into consideration the effect on themselves and their ability to cope, as well as the ability and tolerance of their partner and family to cope in the future. It has to be recognised that a severely disabled child can—although not always—have a huge impact on existing children in the family, however much support is or is not given by the NHS and social services, and we know that that support is often deficient. These women have to make the decision, which is theirs alone, and I say that they have the right to decide.
There is no contradiction in my mind in campaigning for the rights of disabled people alongside the right of a woman to choose what she does with her own body. We have to accept that. A pregnant woman should not be used as a campaign tool for the rights of disabled people. We must also acknowledge that any unborn child needs a willing mother to nurture it and, if that mother is unable or unwilling to do so, we must respect that choice. To impose a duty on a woman to bear a child whom she did not want and give birth to that child after many weeks knowing what the baby’s condition will be is cruel and heartless and should not be done. I beg noble Lords to support the right of a woman to choose in this situation. For the time being, the law should remain as it is.
Viscount Bridgeman (Con)
My Lords, I am most grateful to my noble friend Lord Shinkwin for bringing forward this Bill. It is a courageous move. On the face of it, it restricts the options available to a mother faced with the appalling dilemma of knowing that she is carrying a seriously disabled foetus, and of having the time available for making a decision on abortion reduced under these proposals from the whole period of pregnancy to the first 24 weeks. I am very well aware that I speak after the noble Baroness, Lady Tonge, who articulated this issue so eloquently.
However, my noble friend Lord Shinkwin has seen this problem in a different light—a vision shared by most of the speakers today, and reinforced by his own personal experience. He is supported by a huge body of outside evidence from the UN Committee on the Rights of Persons with Disabilities, the Disability Rights Commission and the UK report on the UN Convention on the Rights of Persons with Disabilities. Furthermore, the parliamentary inquiry into abortion for disability specifically recommended the repeal of Section 1(1)d of the 1967 Act. Finally, there is the legal opinion prepared by Hugh Preston QC, who agrees that the Bill—as others have said—is succinct and limited in its scope. I am grateful to my noble friend for reading extracts from this opinion, which is very realistic. Incidentally, the document reminds us that there is a relatively low threshold for aborting a disabled baby under Section 1(1)(a) .
My noble friend recalled the statistics that revealed the large number of abortions on the grounds of disability that had taken place over the past five and past 20 years respectively. He also mentioned that there has been only a tiny decrease in overall abortion numbers of 0.32% over the period 2005 to 2015. My noble friend has significantly described the law as it stands as “abortion by stealth”, and most certainly not what was intended by the Abortion Act 1967 or the Human Fertilisation and Embryology Act 1990.
In conclusion, I congratulate my noble friend on his meticulous research and the compelling case he makes, given his truly personal experience, for the removal of Section 1(1)(d) of the Abortion Act, which this Bill proposes. I look forward to the Minister’s reply.
Lord Elton (Con)
My Lords, this is not a field in which I am expert but it is one on which one has to take a position. The noble Baroness, Lady Tonge, helpfully indicated the tensions involved in these cases. I congratulate my noble friend Lord Shinkwin on his logical and clear speech. He said that he believed the Bill was modest and reasonable. That is a perfect description of its progenitor—modest and reasonable. I congratulate him on the skill of his advocacy. I realise that other considerations are involved when it comes to the world in which the foetus will be born. Having listened to the speech of the noble Baroness, Lady Nicholson, I believe that the Germans have the right approach in that they know that foetuses are people, whereas we treat them as if they are not. If you put that into the equation, the balance comes down on the side of my noble friend. That is all I am qualified to say.
Baroness Hayter of Kentish Town (Lab)
First, I pay a heartfelt tribute to the noble Lord, Lord Shinkwin, for his living testimony that disability is as much in the mind as in the body. As others have said, as we have recently witnessed at the Paralympics, many of us so-called able-bodied are indeed rather weak imitations of those either born with, or who later acquire, a physical or mental disadvantage.
Despite the contribution that disabled people make to national life and their human right to equality of treatment, there are, sadly, still huge hurdles in the way of many of them being able to pursue a full, and indeed fulfilled, life. The House does not need me to enumerate the physical barriers, whether access to transport, buildings, facilities or the availability of aids or support required, or the social and psychological barriers—in the minds of others, of course—in terms of expectation or discrimination, to say nothing of the lack of adequate resources to meet their additional needs. Of course, all this is not helped by the Government’s welfare reforms, which I hope the noble Lord, Lord Shinkwin, continues to rail against within his own party. Indeed, just yesterday in the House the noble Baroness, Lady Deech, said that,
“the Government have not removed the barriers between disabled people and jobs. There is a lack of transport and an unwelcoming workplace. What disabled people need—and I hope that this will be favourable to the Minister—is that all buses should be accessible with audiovisual information and all the taxi provisions of the Equality Act should be brought into force”.
The noble Baroness, Lady Thomas of Winchester, noted:
“Up to 600 disabled people a week are losing their Motability cars because of the harsh PIP reassessment test”.—[Official Report, 20/10/16; cols. 2437-38.]
Therefore there remains much to do, in virtually every avenue of life, to improve the life chances and opportunities of disabled people so that they—and we—can benefit from them achieving their full potential.
However, I have to query whether a Bill, no matter how well intentioned, which could have the effect of forcing some 200 or 300 women a year to carry to full term a much-wanted and planned child, knowing it might not even see the light of day, or live just a few hours or days or face a life of pain and illness, is the best way of moving us further along the line of promoting equality and removing disability discrimination. The BMA, as well as the Royal College of Obstetricians and Gynaecologists, the Faculty of Sexual and Reproductive Healthcare, and the British Maternal and Fetal Medicine Society all oppose the Bill, which they describe as neither “patient nor woman-centred” and which they think is about restricting abortion care, while the Genetic Alliance stresses that,
“abortion on grounds of foetal abnormality is an important component of the options available to a woman who discovers that she has a pregnancy affected by a serious genetic condition”.
As it says, genetic conditions can often come to a couple with no advance warning. Where it is due to an autosomal recessive condition, they are likely to have discovered the risk only during the pregnancy—a shocking, disappointing, often devastating discovery, and frequently of a condition serious enough to cause stillbirth or severe, eventually lethal, neonatal illness. These are voices we should heed, as the noble Baroness, Lady Tonge, said, as they come from people who, day by day, deal with the women and children who would be affected by the Bill. In addition, I am sure that they deal with situations which I am certain the noble Lord, Lord Shinkwin, never meant to cover but which would be caught by his Bill.
We welcome the attention the noble Lord draws through the Bill to the continuing discrimination disabled people face, but this is not the way to improve their lives.
Baroness Chisholm of Owlpen (Con)
My Lords, I start by congratulating my noble friend Lord Shinkwin on securing time for the consideration of this Bill. We have had a very interesting and thought-provoking debate on a subject that remains a sensitive area of public policy and on which we have heard a range of strongly held views.
I should start by setting out the current legal position regarding abortion for foetal abnormality and the possible introduction of non-invasive pre-natal testing—NIPT—for Down’s and other syndromes. Under the Abortion Act 1967, women have early access to safe, legal and regulated abortion services. In each case, there should be careful and sensitive inquiry as to the reasons for requesting an abortion. These reasons will be particularly complex in the case of abortions for foetal abnormality, where the pregnancy is far more likely to have been planned and where the woman and her family will need information on and time in which to reach a decision with her doctor and other health professionals.
It is a sad reality that not every pregnancy goes to plan, and foetal abnormalities of varying degree of severity occur. Abortion is currently available where two doctors agree that,
“there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities to be seriously handicapped”.
In 2015, 3,213 abortions were performed under those grounds on women resident in England and Wales. Some 230 of those were performed at gestations of 24 weeks and over.
Antenatal screening enables practitioners and maternity teams to monitor the development of the foetus throughout pregnancy, and as technology continues to progress, the ability to detect foetal abnormalities increases. Non-invasive prenatal testing, also known as cell-free DNA, is a relatively new test that can identify pregnant women who have a higher chance of having a baby with certain genetic and chromosomal conditions, such as Down’s, Patau’s and Edwards’ syndromes. So far, non-invasive prenatal testing has been used by the NHS in special circumstances; for example, to detect genetic changes leading to specific skeletal abnormalities and certain forms of cystic fibrosis. In addition, non-invasive prenatal testing for Down’s, Patau’s and Edwards’ syndromes is currently available privately.
On 15 January 2016, the UK National Screening Committee announced its recommendation that non-invasive prenatal testing should be introduced as an additional test into the NHS foetal anomaly screening programme in England as part of an evaluation. That is because the evidence suggests that non-invasive prenatal testing is much more accurate than the current testing used in screening and can substantially reduce the number of pregnant women needing an invasive test, which carries a high risk of miscarriage. The introduction of non-invasive prenatal testing would not alter fundamentally the choices currently available to pregnant women who opt to take up the offer of screening. We want women to make informed decisions and access safe and appropriate tests. We are considering the recommendation from the UK National Screening Committee carefully and will make an announcement in due course.
Appropriate information and support should be offered to all women undergoing antenatal screening. Regardless of how an abnormality is detected or suspected, a woman has to be given time to understand the nature and severity of the condition so that she is able to reach an informed decision about how to proceed and whether to continue with the pregnancy or seek a termination.
It is an understatement to say that the decision to end what is usually a wanted pregnancy is extremely difficult and painful for most parents. The severity of the prognosis has a major bearing on their decision-making. Once an abnormality has been confirmed, arrangements should be made for the woman to see an expert who has knowledge about the abnormality and the options available. All staff involved in the care of a woman or couple facing a possible termination of pregnancy must adopt a non-directive, non-judgmental and supportive approach.
In addition, Public Health England, which takes the lead on the NHS screening programmes, recently met stakeholders from the Down’s Syndrome Association to understand where further improvements can be made to ensure that prospective parents get the right information and support throughout the screening process when making these very difficult decisions.
Sometimes, the diagnosis or prognosis does not give the whole picture of each individual case. In 1990, when the grounds for abortion were amended, Parliament agreed that doctors were best placed to make these decisions with the woman and her family. In 2010, the Royal College of Obstetricians and Gynaecologists published updated guidance on the termination of pregnancy due to foetal abnormality. This guidance concluded that it would be,
“unrealistic to produce a definitive list of conditions”,
and that,
“the seriousness of a fetal abnormality should be considered on a case-by-case basis, taking into account all available clinical information”.
I must make it clear that as they are matters of conscience, the Government maintain a neutral stance on abortion issues. We have had a good debate, and I look forward to hearing what my noble friend Lord Shinkwin has to say in response to the points that have been raised.
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.