Moves to remove protection for unborn babies with disability in Northern Ireland must be resisted

Northern Ireland's justice minister has said he is going to consult on changing abortion laws to allow women carrying babies with ‘fatal fetal abnormalities’ to have a termination.

David Ford said he hoped to put out a consultation document for the ‘potential for change’ by next Easter.

The minister told BBC Radio Ulster's Nolan Show he would review the legislation after two women told their stories earlier this year about discovering that their babies had anencephaly, a severe brain abnormality.

The British Abortion Act 1967 does not apply in Northern Ireland which is governed by the 1861 Offences against the Person Act, and the Criminal Justice Act 1945. 

These laws only allow terminations to save a woman's life, or if there is a risk of permanent and serious damage to her mental or physical health.

Very few abortions are carried out on these grounds in Northern Ireland itself. Over the years 2006-7 to 2011-2 the annual figures were respectively 57, 47, 44, 36, 43 and 35.

Women from Northern Ireland do however come to the British mainland to have abortions. In 2012, for example, there were 905 abortions carried out on Northern Ireland residents in England and Wales (see table 12a here).

But according to the Department of Health only two of these were for fetal disability. This is because very few women in Northern Ireland carrying babies with fetal disability choose to abort their babies.

On 3 December, in response to a parliamentary question (see page 31 here), Edwin Poots, Minister of Health, Social Services and Public Safety, said he had received a vast amount of correspondence from women carrying babies with severe disabilities, many of whom had made the decision to proceed with the pregnancy. ‘They received real value from going ahead with the pregnancy’, he said.

It is often assumed that women will naturally choose to abort a baby with a serious disability, but the Northern Irish experience shows that this is in fact often not the case.

We see a similar pattern in the Republic of Ireland where an article in the Irish Independent last week reported that only 51 abortions per year took place on Irish women in 2011 in England and Wales for fetal disability. Of these I have ascertained that the majority were for non-fatal abnormalities and only eight were for anencephaly.

But while 90% of Irish mothers or families facing this issue do not abort their babies, in Britain, up to 90% do.

In fact between2002 and 2010 there were 17,983 abortions of disabled babies in Britain. The overwhelming majority of these were for conditions compatible with life outside the womb and 1,189 babies were aborted after 24 weeks, the accepted age of viability.  

This 17,983 included abortions for serious disabilities like anencephaly but also babies with Down’s syndrome, cleft palate and club foot. 

It is an old legal adage that hard cases make bad law. This is because making exceptions in law for difficult cases inevitably leads to incremental extension to less serious cases and also a change in the public conscience.

Presently the law in Northern Ireland offers legal protection to babies with disability. But were it to change, even for extreme cases, the British experience demonstrates how things would quickly escalate and how public attitudes would change (I have previously documented the frightening attitudes to disability amongst the British public).

Furthermore, contrary to public perception, the psychological trauma for women having abortions for fetal disability is often very significant.

Northern Ireland currently has a law which protects disabled babies and allows abortion only when the mother’s life or health is under very serious threat. It already has built into it the provision for judges and prosecutors to temper justice with mercy in hard cases.

We must resist any attempt to weaken it further.

See also ‘Defending the ‘indefensible’? Twenty reasons to think twice about aborting a baby with anencephaly’

Women who keep their disabled babies face coercion, discrimination and disdain

Last Monday I attended the second oral evidence session of the Parliamentary ‘Inquiry into Abortion on the Grounds of Disability’ (more background here)

The current law permits an abortion to take place up to birth (40 weeks) if prenatal tests indicate that the child may be disabled when born. There is a legal limit of 24 weeks for abortions on other grounds. 

Abortions are currently permitted at any time up to and including birth if there is a ‘substantial risk’ that the child might be born ‘seriously handicapped’. The law does not define these criteria and they are broadly interpreted.

This ground for abortion is known as Ground E in practice and, according to Department of Health statistics, 2,307 ‘Ground E’ abortions were carried out in 2011.

The Equality Act 2010 protects disabled people from discrimination. The Act prohibits discrimination arising from a disability by preventing one person from treating another less favourably because of their disability. 

The current abortion law thereby discriminates against disabled babies in two ways.

First, it has a different upper limit for disabled babies and babies without disability (40 and 24 weeks respectively). Second, it allows for some disabled babies to be aborted under ground E (those who will be born with a ‘serious’ handicap) but not others.

Last Monday we heard evidence at the inquiry from disability rights activists, parents of children born with disabilities and support groups for affected families.

There were several strong themes that emerged.

First, there seemed to be very little support or information available for families who wanted to keep their babies, as opposed to having them aborted.

Second, there was a strong presumption from doctors that parents with disabled children would choose to have them aborted.

Third, there was a huge amount of subtle or direct pressure placed on parents who decided not to abort. They were repeatedly asked to reconsider their decisions and treated like pariahs – in short they were discriminated against.

It is just this sort of pressure that has led some commentators to talk about abortion for disability as a ‘coercive offer’. And there is a growing literature of personal testimonies around this issue.

Two powerful recent books on the subject are ‘Defiant Birth: Women Who Resist Medical Eugenics’ by Melinda Tankard Reist and ‘A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief’ by Amy Kubelbeck.

‘Defiant Birth’ tells the personal stories of women who have resisted ‘medical eugenics’ and dared to challenge the utilitarian medical model/mindset - women who were told they shouldn't have babies because of perceived disability in themselves, or shouldn't have babies because of some imperfection in the child. 

'They have confronted the stigma of disability and in the face of silent disapproval and even open hostility, had their babies anyway, in the belief that all life is valuable and that some are not more worthy of it than others.

Disparaged and treated as pariahs for departing from accepted medical wisdom they have chosen non-compliance with medical/social prejudice and defiantly said yes to their babies, and no to the cult of bodily perfection.'

This is a controversial book that looks critically at the way in which medical eugenics is being used as a contemporary form of social engineering. Reist has written a strongly argued and trenchant introduction setting out the issues, among them the idea that having children is about ‘quality control and the paradigm of perfection.’

‘Defiant Birth’ explores what is means to have ‘less-than-perfect pregnancies’ and ‘genetically different babies.’ People with disabilities have been raising these issues for many years, but on the whole they remain silent and marginalised in the media.

Several parents recount the joy and love they have experienced with their 'abnormal' babies, including children with Down syndrome and achondroplasia ('dwarfism'). The book also has inspiring stories told by parents with their own significant illnesses and disabilities, including cerebral palsy.

Many write of the pressure, and even blame, from family, friends and professionals, to choose termination, justified as saving their children from suffering. This perspective is challenged by words of those with disabilities. Abortion is also justified to save the community from future costs, which is the fundamental (and profoundly concerning) reason for prenatal testing for abnormalities.

The stories also challenge the idea that allowing a baby with a fatal abnormality to survive to birth will be intolerably traumatic for the family. As mother Teresa Streckfuss poignantly writes about her son, who died 24 hours after birth from anencephaly:

‘Someone asked us after Benedict died, was it worth it? Oh yes! For the chance to hold him and see him and to love him before letting him go. For the chance for our children to see that we would never stop loving them, regardless of their imperfections. Children are always a blessing, even if they don't stay very long.’

The question of babies with disabilities incompatible with life outside the womb is explored more fully in ‘A Gift of Time’. The author Amy Kuebelbeck is a former reporter and editor for the Associated Press and previously wrote about her experience losing a child in ‘Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life’.

The book is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby's life will be brief.

When prenatal testing reveals that an unborn child is expected to die before or shortly after birth, some parents will choose to proceed with the pregnancy and to welcome their child into the world. With compassion and support, ‘A Gift of Time’ walks them step-by-step through this challenging and emotional experience—from the infant's life-limiting prenatal diagnosis and the decision to have the baby to coping with the pregnancy and making plans for the baby’s birth and death.

The book also offers inspiration and reassurance through the memories of numerous parents who have loved a child who did not survive. Their moving experiences are stories of grief—and of hope. Their anguish over the prenatal diagnosis turns to joy and love during the birth of their child and to gratitude and peace when reflecting on their baby’s short life.

‘A gift of life’ is also featured on the ‘Perinatal Hospice’ website, which provides resources and support for those having to care for a dying baby.

CMF previously published a powerful testimony of a Christian psychiatrist who faced just this situation under the title ‘A life Precious to God’ and I have blogged previously about a similar more recent story.

Dame Cicely Saunders, founder of the modern hospice movement said, ‘You matter because you are you, and you matter until the last moment of your life.’

I pray that the testimonies in these two books and this parliamentary inquiry will help lead us to a point as a society where we are prepared to treat disabled babies, these most vulnerable of human beings, with the honour, respect, love and protection that they deserve and to give more information and support to their parents and families.

Survival of twins born at 23 weeks and new Inquiry into abortion for disability reopen debate on abortion upper limits

When twins Mackenzie and Cameron Glover were born 17 weeks prematurely on 17 June last year, they were so tiny that their mother said they could ‘fit inside a pint glass’.

Now, after a lengthy battle for life against the most astonishing odds, the boys, born at just 23 weeks and three days gestation, have become one of the most premature sets of twins ever to survive in the UK.

Their mother Pam says her miraculous boys fill her with wonder – but she is left angry and mystified that the law continues to permit the abortion of babies older than her sons were at birth.

Pam said: ‘For us now, the idea that it’s possible to abort a child up to 24 weeks – older than Cameron and Mackenzie were – just doesn’t bear thinking about.’

The story, reported in the Daily Mail this week, has reopened the debate about abortion time limits.

It comes just as Fiona Bruce MP launches a parliamentary inquiry into abortion for disability which will examine the law, professional guidance and information and support given to parents.

Disabled babies can be aborted right up until the time of birth and in 2011, according to Department of Health statistics, 146 were aborted after 24 weeks.

In all 2,307 abortions were carried out in 2011 under Abortion Act 1967 Ground E, for disability. This included more than 500 abortions for babies with Down’s Syndrome although the real number may well be twice as high.

Abortion industry leader Ann Furedi of BPAS has reacted strongly against the consultation saying that abortion should be a women’s choice.

However she has already come in for sharp criticism from Saving Downs, a charity advocating for children with Down’s syndrome, which has welcomed the inquiry saying that it is ‘exactly what the disability community needs: the removal of discriminatory laws against the disabled’.

Last year Health Minister Jeremy Hunt said that he personally favoured a lowering of the upper limit for aborting non-disabled babies to 12 weeks.

He is not alone. 13 of the current 16 Tory MPs in cabinet actually voted for a lowering of the limit in 2008 when the issue was last debated – including 7 for 20 weeks, 2 for 16 weeks and 3 for 12 weeks.

There are currently 16 countries in Europe which have upper limits of 10-12 weeks and that Britain has one of the highest upper limits and highest abortion rates in Europe.

Public and parliamentary opinion is changing on abortion for three main reasons – 4D ultrasounds, debates about fetal sentience and premature babies like the Olivers surviving below 24 weeks in neonatal units.

All this is increasing awareness about the ‘humanity of the pre-born baby’ and heightening concerns about abortion.

Ultimately societies will be judged by the way they treat the most vulnerable, and there is no one more vulnerable, more innocent and killed in greater numbers than a preborn baby.

Last year I was one of nine signatories to a letter to the Telegraph describing the practice of aborting babies for disability as a form of ‘eugenics’ and arguing that the present law is deeply hypocritical and discriminatory.

This consultation will be an opportunity for disabled people and their advocates to speak out against this practice and possibly bring some much needed reform.

Current law supports eugenic abortion for disabled people – our letter in today’s Daily Telegraph

I am one of nine joint signatories to a letter in the Daily Telegraph today arguing that the success of the Paralympics should trigger a rethink of Britain’s abortion laws to make it illegal to terminate a pregnancy solely on grounds that a child will be born disabled.

We describe the practice of aborting foetuses on physical grounds as a form of ‘eugenics’ and say that while pregnancies can be terminated even up to 40 weeks on physical grounds in certain circumstances, the moment the child is born a ‘moral volte-face’ is performed and the official approach is ‘full of compassion’.

This we argue is deeply hypocritical and discriminatory.

Abortion is legal in the first 24 weeks of pregnancy in Britain if the pregnancy poses a risk to the mother’s mental or physical health greater than that from having an abortion. But after 24 weeks, an abortion is allowed only if there is substantial risk of ‘serious’ physical or mental abnormality.

The letter is the basis of a long article in the same issue of the paper which is well worth reading.

The full letter (accessible on Telegraph website – you need to scroll down from here) is titled ‘Disability Hypocrisy’ and reads as follows :

Disability Hypocrisy

SIR – A special-needs child in the womb can be aborted at up to 40 weeks. But once he or she is born, we do a moral volte-face and become full of compassion.

The recent Paralympics made this contradiction yet more glaring. The athletes produced such astonishing examples of courage and triumph over disability that we now have to rethink what we mean by ‘disabled’ and ‘able’.

Eugenic abortion is bad medicine. Killing people with disabilities, rather than striving to support and care for them, is contrary to the high principles of medicine.

We should be proud of Britain’s unique programme of children’s hospices and Zoe’s Place baby hospices. These are an example of a positive, civilised response to the challenge of disability.

We encourage Parliament to repeal the discriminatory section of the Abortion Act 1967, which allows eugenic abortion up to birth, and instead to promote research into disabilities which, once diagnosed, currently amount to a prenatal death sentence.

Professor Jack Scarisbrick
National Chairman, Life

Josephine Quintavalle
Director, Comment on Reproductive Ethics

Dr Peter Saunders
Chief Executive, Christian Medical Fellowship

Nola Leach
Chief Executive and Head of Public Affairs, CARE

John Deighan
Parliamentary Officer, Catholic Bishops' Conference of Scotland

Dr Agneta Sutton
Fellow, Center for Bioethics and Human Dignity

Andrea Minichiello Williams
Chief Executive, Christian Concern

Peter Elliott
Chairman, Down Syndrome Research Foundation UK

Dominica Roberts
Chairman, ProLife Alliance

The signatories are organisational leaders and include Peter Elliott, a businessman who founded the Down Syndrome Research Foundation UK, after the birth of his son, David, in 1985.

I have recently drawn attention on this blog to the frightening attitudes to disability revealed in responses to a Daily Mail article on abortion of IVF babies for Down’s syndrome.

Between 2002 and 2010 there were 17,983 terminations on the grounds that there was a ‘substantial risk’ that the babies would be ‘seriously handicapped’ — known as Ground E abortions. The overwhelming majority of these were compatible with life outside the womb.

Of the 17,983, a total of 1,189 babies were aborted after 24 weeks, the accepted age of viability, after which there must be such a serious risk for an abortion to be legal if the mother is not in danger.

Figures also showed a total of 66 terminations after 24 weeks were because of problems with the nervous system of the foetus, such as spina bifida.

The abortions included 26 for babies with cleft lips or palates and another 27 with ‘congenital malformations of the ear, eye, face or neck’, which can include problems such as having glaucoma or being born with an ear missing. Of those, one was aborted after 24 weeks, in 2003.

Last year 147 babies were aborted after 24 weeks, a rise of 29 per cent since 2002. Altogether in 2010, 482 babies were aborted for Down's syndrome, including 10 who were over 24 weeks. Over the period 2002-2010 there were altogether 3,968 Down’s syndrome babies aborted.

There were also 128 terminations in 2010 for the nervous disorder spina bifida, including 12 after 24 weeks.

There is no doubt that bringing up a child with special needs involves substantial emotional and financial cost, and yet at the very heart of the Christian gospel is the Lord Jesus Christ who chose to lay down his life to meet our own 'special needs'. The Apostle Paul tells us that Christ died for us 'when we were powerless' (Romans 5:6) and that 'bearing one another's burdens' is at the very heart of Christian morality (Galatians 6:1).

The way we treat the most vulnerable in our society speaks volumes about the kind of society that we are and the current abortion law clearly discriminates against disabled people. It should be revised.

Families of children with significant disabilities indicate that their lives are enriched

Alex Schadenberg has this last week reported on a new study on children with trisomy 13 and 18 (Patau's and Edwards' syndrome respectively) which is well worth reading. I have reproduced it here. I have myself previously blogged about trisomy conditions including a wonderful testimony.


A research study that was published in the current edition of the Journal Pediatrics found that parents of children with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, indicated that the parents considered the child to be happy and found that their lives were enriched by the child.

The findings are very different than that attitude of many pediatricians towards these conditions. The Canadian Press reported:

Medical textbooks are grim and bleak about babies born with genetic codes considered "incompatible with life." But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.

Recently I came across the story of Lilliana Dennis (pictured), a child who is living with Trisomy 18. After reading the heartfelt story about Lilliana and the Dennis family I responded by writing an article titled: Trisomy 18 is not a death sentence.

The research study was carried out by Dr. Annie Janvier - specialist in Pediatrics and Ethics at the University of Montreal and Sainte Justine Hospital in Montreal, Barbara Farlow B Eng MBA - patient safety Canada, and Dr. Benjamin Wilfond - Center for Pediatric Bioethics, Seattle Children’s Research Institute and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.

The research team invited 503 parents of children who had a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child's condition was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family.

On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.

* 30% of the parents had requested a plan of treatment based on "full intervention."
* 79% of the children who received "full intervention" were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with "full Trisomy" 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.

Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

The article in the Canadian Press interviewed Barbara Farlow, one of the authors of the study. Farlow, the mother of a child who had Trisomy 13 stated:

"We didn't want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy . . . then we were willing and able to care for her, despite her limitations,"

Annie lived for 80 days. When an illness brought her back into hospital and she stopped breathing, the staff was slow to try to resuscitate her, despite her parents' wishes. Later, Farlow and her husband discovered Annie's medical file had a DNR — do not resuscitate — order on it, even though they hadn't authorized it.

Dr Annie Janvier stated to the Canadian Press that:

"What we predicted as doctors happening to all these families didn't happen," says Janvier, who admits the findings are receiving a lukewarm response in some quarters.

"I just want to show that these kids mean something to their parents, ... And they seem like they have a quality of life that's acceptable. Doctors are not torturing them. We're not giving them undue pain. And they should be treated as unique children."

Dr. Benjamin Wilfond, the lead research author in the study, told Reuters news that:

"There is a broader range of survival and experiences than providers know. The parents may be getting this information online and clinicians may need to rethink what they say to parents, I think the point of our paper is to say these are quite serious conditions, but saying it's hopeless is inconsistent with reality."

I have known Barb Farlow and her family for several years. I have learned, through Barb, much about the lives of children with Trisomy conditions. It is my hope that society will break-through the negative bias towards children with profound disabilities, such as Trisomy 13/18. Everyone is a unique human being and people with disabilities offer other people the opportunity to accept and understand the true meaning of dignity. Hopefully this study will create new opportunities for families and the children with disabilities.

More information can be found at: http://www.trisomy.org/

Response to Daily Mail article on abortion of IVF babies for Down’s syndrome reveals frightening attitudes to disability

There is an article in the Daily Mail today reporting on the incidence of abortion for Down’s syndrome in IVF pregnancies.

Statistics show that in 2009, the most recent year for which figures are available, a total of 127 abortions were carried out on babies conceived through IVF-type assistance.

The data held by the Human Fertilisation and Embryology Authority shows that Down's syndrome was the most commonly given reason for an abortion, cited in 31 of the cases – three times as many as in 1999.

Foetal abnormality was the next biggest reason for abortion, accounting for 19 cases, while 15 babies with Edward's syndrome – another condition caused by the presence of an extra chromosome – were also terminated.

As it is not mandatory for reasons for terminations to be recorded, the number could be higher. No reason was given in 22 cases. Between 2005 and 2009, some 123 foetuses with Down's were terminated.

This is not new information and in many ways is not surprising.

As I have noted before, the number of babies being conceived who have Down's Syndrome is increasing dramatically.

There were 1,067 babies with Down’s syndrome conceived in England and Wales in 1989 but by 2009 this had risen to 1,887, mainly due to the fact that women are delaying having children until an age when the risk of having a child with this condition is higher.

But despite this the number of Down's Syndrome babies born alive each year has actually gone up only very slightly from 730 to around 753 over the same period. This is because our society is increasingly taking the view that it is better if children with this condition are not born at all.

In 1989 there were only about 300 abortions for Down’s Syndrome but by 2009 1,171 babies with Down's Syndrome were diagnosed before birth, 62% of the total, and 92% of these were aborted. The number of abortions would have been much higher if more had been diagnosed before birth.

The reasons people are choosing to abort are very clear from readers’ reactions to the comments on the Daily Mail online page.

If you arrange the replies from the most popular down, then the most popular post (currently with 540 thumbs up) reads as follows:

‘It's not selfish to prevent a lifetime of pain, misery and social rejection. Not to mention the psychological damage those with Down's Syndrome experience. It must be a very tough decision for the mothers so the added pressure and guilt-tripping does not help.’

The third highest (with 427) reads:

‘Why is this a news story? I don't think anyone would 'choose' to have a child with a disability of any type if they had a choice. Survival of the fittest should dominate anyway. Red arrow away, but I'm saying what most people think.’

By contrast that which has attracted the most opposition (with 246 thumbs down) says:

‘These women are the result of the 'me me me' consumerist society - where nobody apparently, should be forced to get outside of their comfort zone - in case it makes them 'feel bad'. It's an utterly disgraceful stat - and eugenics is not too harsh a word to use.’

It is signed ‘mother of three, Dubai’. The 4th and 5th least popular (at -57 and -32) read ‘Do you expect any better of western women today? I don't’ and ‘So these couples are desperate to have a baby - only perfect little ones though please. Try adopting you selfish lot’

Of course some children with Down’s syndrome do have associated disabilities such as heart or gut defects which may require surgery to fix. And some children (both with and without Down’s syndrome!) can be a real challenge to manage.

But the responses are in my view frighteningly indicative of a growing intolerance of disability in our society and do not bode well for the future.

They also display a huge degree of ignorance. Does Down’s syndrome really condemn one to a life of ‘pain, misery, social rejection and psychological damage’? Perhaps in a small minority of cases these may occur but many children and adults with Down’s syndrome are in fact very happy and fulfilled. The tragedy is that these ill-informed prejudices will only increase as people with Down’s fall in number with more effective pre-natal ‘screening’ tests.

There is no doubt that bringing up a child with special needs involves substantial emotional and financial cost, and yet at the very heart of the Christian gospel is the Lord Jesus who chose to lay down his life to meet our own 'special needs'. The Apostle Paul tells us that Christ died for us 'when we were powerless' (Romans 5:6) and that 'bearing one another's burdens' is at the very heart of Christian morality (Galatians 6:1).

For Christian doctors bearing burdens involves not only providing the best medical care for the most vulnerable members of our society, but also supporting their families in the long haul, being prepared to speak out when they are being treated unjustly and doing what we can to oppose unjust and discriminatory legislation and health policy.

All of us are called in a whole variety of ways to engage in the fight for these very special people and others in a similar position of vulnerability. Let's pray that we fight these battles well.

[Picture shows Down's Syndrome performer Hu Yizhou from the China Disabled Peoples Performing Art Troupe conducting at a rehearsal for a concert in Seoul in this March 2004 photo. REUTERS/You Sung-Ho]

Court ruling on assisted suicide reflects discriminatory attitudes to disabled people

The following article was written Amy E. Hasbrouck, Chair of Not Dead Yet, and published on 9 July in the Montreal Gazette yesterday under the title: 'How about the right to cry for help? Court ruling asserting a person’s right to assisted suicide reflects discriminatory attitudes toward the disabled.'

Not Dead Yet is an international organization of people with disabilities who oppose the legalization of euthanasia and assisted suicide.

The article was prompted by the recent controversial court ruling in British Columbia to declare Canada’s law against assisted suicide unconstitutional but the arguments are relevant everywhere.

For commentaries on the British Columbia ruling and its relevance see recent commentaries by Will Johnston, Margaret Dore and Alex Schadenberg. The ruling is important in a UK context as lawyers representing Tony Nicklinson have sought to use it as evidence in furthering his case.

It has taken me a long time to read through the nearly 400 pages of the June 15 decision of the British Columbia Supreme Court on the issue of assisted suicide. I found reading it to be like a journey to a dark place, full of raw emotions.

The long and the short of the reasons for judgment issued by Justice Lynn Smith is that legal provisions in Canada prohibiting assisted suicide law are unconstitutional because they impede disabled people’s rights to life, liberty and security of the person.

The judge believes that having a disability or degenerative illness is a rational reason to want to die, and that those of us with disabilities should be helped to die if we can’t do it neatly or efficiently ourselves.

Justice Smith doesn’t appear to believe that people with disabilities and terminal illness are ever coerced, persuaded, bullied, tricked or otherwise induced to end our lives prematurely. She believes those researchers who contend there have been no problems in jurisdictions where assisted suicide is legal, and she rejects evidence suggesting there have been problems.

She writes: “It is unethical to refuse to relieve the suffering of a patient who requests and requires such relief, simply in order to protect other hypothetical patients from hypothetical harm.”

I’ll have to mention that to some of my hypothetical friends who say they have been pressured by doctors, nurses and social workers to hypothetically “pull the plug.”

The same goes for all those folks who succumbed to the pressure; I guess they’re only hypothetically dead.

Reading the B.C. court decision is hard as a person with a disability because it’s unpleasant to discover underlying assumptions about people with disabilities.

It’s one thing when a random guy walks up to you on the street and says, “I’d rather be dead than be like you.”

It’s quite another, though, when a Canadian judge says of individuals who may experience such suffering (physical or existential), unrelievable by palliative care, “that it is in their best interests to assist them in hastened death.” Same message, only the judge uses bigger words.

So what of the “suffering” she describes?

Well, a lot of physical pain can be managed by effective palliative care; and sedation is available for the most severe pain. “Existential suffering” is when someone has not come to terms with a disability or terminal diagnosis; that takes counselling, peer support and a desire to get on with one’s life. Of course, coming to terms would be a lot easier if people weren’t telling us we’d be better off dead.

The B.C. Supreme Court has chosen not to listen very closely to disability-rights advocates with more than 20 years of experience battling discrimination; instead, the court relied on the stories of people who have accepted the view that disability is undignified, and that people with disabilities should be given a streamlined path to death whenever they want it and however they want it.

Justice Smith assumes that, because it’s no longer illegal, suicide is somehow an affirmative right; and if you can’t do it the way you want to do it, then you should have the right to have someone do it for you.

But she forgot about the “right to fail;” that more than 90 per cent of suicide attempts are unsuccessful. What about the right to “cry for help?”

The judge also seems to have forgotten about the billions of dollars spent each year on suicide-prevention programs and mental-health care.

Nor does she mention that a non-disabled person who says he wants to kill himself can be committed to a psychiatric hospital against his will.

To put it simply, if a non-disabled person wants to commit suicide, she’s considered irrational and mentally ill, and is treated for depression, or maybe even locked up to prevent her from hurting herself.

But if a disabled person wants to kill herself, she’s told she’s making a reasonable choice, and not only has the right to do so, but is even helped to complete the act so her death is guaranteed where most other suicide attempts fail.

That sounds like discrimination to me.

Perhaps the most bizarre part of the decision is the judge’s finding that outlawing assisted suicide somehow deprives people of the right to life. Sure, she has a logical argument to make her point, but using basic common sense, it doesn’t pass the sniff test.

It’s hard enough for those of us with disabilities to deal with architectural and communication barriers, discrimination, inadequate support services and public policies that limit our integration and equality, let alone contending with people who grease the skids to the River Styx.

Growing pressure on disabled people heightens fears about euthanasia

Disabled people are being put under much more pressure in the current social and economic climate.

The disabled people’s charity Scope, in collaboration with ComRes, has published survey results from a series of quarterly polls, which show that disabled people feel that discrimination against them is getting worse.

With Demos, Scope have also published Coping with the Cuts, a report that assesses the impact of cuts to social care budgets on disabled families across England and Wales.

A related set of figures from the police demonstrates that disability related hate-crimes are up a fifth on last year.

Finally, a report by the EHRC has found that although high-profile disability harassment receives police attention and media coverage, low-level criminality, abuse and harassment are so regular that they are regularly ignored by the authorities. Many disabled people consider them to be inevitable.

No wonder that all the major disabled advocacy groups, including NCIL, Scope, UKDPC, RADAR and Not Dead Yet UK, remain firmly opposed to any change in the law that would allow euthanasia or assisted suicide.

Given the underlying prejudice and discrimination that already exists, they know that in an environment of increasing economic pressure, they would be subtly leant upon to end their lives if Britain were to follow the path the Netherlands and Belgium have taken to give doctors the power to end life.

I previously reported on Scope’s warning about the 'headlong rush' to allow assisted suicide in Britain and a previous Comres poll which found that 70 per cent of disabled people were concerned that such a change would lead to pressure being placed on them to end their lives prematurely.

Scope boss Richard Hawkes has claimed that Lord Falconer's discredited Commission on Assisted Dying, which was set up to examine whether a change in the law is needed, has already made up its mind. And he fears disabled people could feel under pressure to take their own lives.

This warning followed the launch of the Resistance Campaign in June 2010 when disabled people from across the UK came together in Westminster in order to ensure that legislation prohibiting assisted suicide and euthanasia remained in place.

Baroness Jane Campbell of Surbiton, convenor for Not Dead Yet UK, has previously pointed out that the likelihood of cuts in services across the country would create additional challenges for disabled people. She said:

'There have been two attempts to weaken assisted dying legislation in the past four years, with further discussions taking place in the Scottish parliament now. We face a bleak situation if calls for assisted suicide to be lawful are renewed whilst vital services are being withdrawn or denied.'

'Disabled and terminally ill people need help and support to live, not to die. We cannot allow others to speak for us; especially those who seek to offer us the choice of a premature death. It is not a choice – it is to abandon us.'

Disabled people have been likened to the canaries in the coalmine – they are often the first to spot danger on the horizon. We ignore their voices at our peril.

Stories of triumph over adversity should get more column inches and air time

Today Nikki Kenward, who was left disabled after a partial recovery from paralysis caused by Gullain Barre syndrome, will stage a protest outside parliament about the dangers that a changing the law to allow assisted suicide or euthanasia would pose to those with serious disability.

Her own inspiring personal story is told in the Daily Mail today and well worth a read.

Kenward (pictured) wants particularly to draw attention to Ms M, a woman in her early 50s in minimally conscious state, whose case is currently being heard in the Court of Protection. M’s sister and partner wish to have her nutrition and hydration withdrawn so that she can be starved and dehydrated to death.

It has long been a ploy of the pro-euthanasia movement that allowing the death by dehydration of people who are not imminently dying will make lethal injections for euthanasia much easier for society to accept. It is in other words part of a softening up exercise. So there is understandingly a lot of public interest in this landmark case which has the potential of setting very dangerous legal precedents. The judge visited M on Monday this week and expert witnesses will be giving evidence today.

It is a popular misconception that most people with serious disability or terminal disease wish to have their lives prematurely ended. But in fact this is true only of a very small vocal minority to whom the BBC in particular, that 'cheerleader for euthanasia', has given an international platform. This has had the effect of swaying public opinion and fuelling suicide contagion.

But more recently there has been a steady trickle of ‘good news’ stories in the print media of people overcoming adversity, of which Nikki Kenward’s is the latest. I have also recently blogged about other examples – amongst them are:

1.Martin Pistorius, a South African man who was imprisoned by locked in syndrome for ten years but is now married and running a successful computer company.

2.Alistair Banks, the incurable optimist, – an inspiring story of courage in the face of motor neurone disease.

3.Pauline Thiele, who learnt to love her unborn baby son Liam, who had Edwards syndrome, even though she knew he could not survive .

4.Jean-Dominique Bauby, the French editor of Elle magazine, who suffered a severe stroke, from which he never recovered, and yet wrote, the autobiographical ‘Diving Bell and the Butterfly’ which was ‘dictated’ letter by letter and has been made into a major feature film.

5.Little Charley-Marie Skinner, a baby born with a heart tumour, whose parents were advised to have an abortion. She is now thriving at 19 months.

6.Graham Miles, the pensioner who told how he beat ‘locked in syndrome’ after suffering a massive stroke.

7.Matt Hampson, the Leicester rugby player who suffered tetraplegia in a collapsed scrum and now is an inspirational speaker running a charity to help those ‘less fortunate than himself’.

8. Gary Parkinson, who has locked-in syndrome, and his now acting as a scout for his old football club Middlesborough.

Proponents of assisted suicide, who have expressed a strong persistent wish to be ‘helped to die’ by their own hands, have been granted an international platform by the BBC, to tell their stories in great detail and without adequate cross-examination, creating the false impression that the small minority they constitute are somehow representative of all people facing suffering or death.

Cases are often highlighted in painstaking detail featuring long personal interviews and often with substantial extraneous information about the individual’s personal life. Contrary views are either not expressed, or are at best relegated to single sentence reactionary soundbites. Many of the cases involved have become household names in the UK.

It is therefore gratifying to see news outlets, other than the BBC, giving column inches to cases like those I have outlined above. It is essential that people here this alternative perspective on suffering and assisted suicide.

I recently noted how the soap Emmerdale, had more realistically depicted the devastating effect on those left behind following the assisted suicide of one of its key characters, even though it had previously been much less accurate in depicting what life with paralysis involves for most people.

These recent trends are encouraging. Stories of courage in the face of profound disability or chronic or terminal disease and accounts of how people found strength to overcome adversity, or even to cope with a life situation which they would never have chosen but have no power to change, need to be heard.

Is it too much to ask that some of them might be given an international platform by the BBC? We will have to wait and see.

A life precious to God – how to cope when you find your unborn baby has special needs

There is a deeply heart-warming story in the Daily Mail today titled, ‘Doctors told us to abort our little girl as she wouldn't survive birth - but our little fighter has flourished’

When an ultrasound scan showed ‘a massive tumour covering the entire left chamber of her heart that was restricting blood flow’ Charley-Marie Skinner's parents Heather and Andy were informed that there was little chance she would survive her birth and were advised to have an abortion.

They refused and were glad that they held their ground.

Now Charley-Marie (pictured) is nineteen months old and thriving – and if she does eventually deteriorate and require surgery the tumour may well be operable.

I have lost count of the number of times I have heard stories like this. Why is it that the medical profession responds in this knee-jerk fashion recommending abortion for disabilities we would make every effort to treat or correct in a baby after birth?

Why are not more parents given the opportunity, with proper support, to see their babies’ births through? Why is it that offering surgery, other treatment, or if relevant terminal care, to disabled, sick or dying babies seems no longer to be regarded as a serious option?

Why has our society instead reached the conclusion that these most vulnerable members of the human race, because they are disabled, sick or dying, have lives that are somehow not worth living? That they are, in other words, better off dead?

Recently released abortion statistics revealed that between 2002 and 2010 there were 17,983 terminations in Britain on the grounds that there was a ‘substantial risk’ that the babies would be ‘seriously handicapped’ — known as Ground E abortions. The overwhelming majority of these ‘abnormalities’ were compatible with life outside the womb.

Of the 17,983, a total of 1,189 babies were aborted after 24 weeks, the accepted age of viability, after which there must be such a serious risk for an abortion to be legal if the mother is not in danger.

A few years ago we carried in the CMF Student journal Nucleus, the story of a baby whose parents opted to love and care for her even though she had abnormalities that were not compatible with life outside the womb.

But they still went through with it and gave her all the love and care they could in the few hours their daughter Jennifer had with them.

I’d thoroughly recommend reading their testimony, ‘A life precious to God’.

The author Karen Palmer, a Christian psychiatrist, makes a powerful case for choosing to give birth to a disabled baby rather than having it aborted.

All pastors and prospective parents should read this, lest they are ever called to advise or cope with the arrival of a little one with extra special needs.

I leave the closing comments to Karen (but do please read her whole story):

Why did it happen? I don't believe that we can always know the reason God allows these things to happen. There's a spiritual battle going on and often the devil appears to have his way. What we do know is that God our loving Father, cushioned us and sustained us with his grace. It wasn't him who hurt us - he hurt with us.

What did we learn? We learned that God is intimately involved with us and with a tiny baby. We learned that even such a tiny, damaged life is precious to him. We learned better how to care for each other and our parents and friends. Our church learned how to care for us. We saw that terminating a pregnancy where there is an abnormality denies the parents and wider family the opportunity to grieve and remember a real and valuable member of that family. We learned that God answers prayer.

After Jennifer's death, a steadfast friend said that when Jennifer arrived in heaven there would be great rejoicing and celebration because of all she achieved in her short life. I dream that when I arrive there people will say 'Ah! You're Jennifer's mother' and I'll be so proud!

Disabled people fear change in assisted suicide law

Changing the law on assisted suicide would put pressure on disabled people to kill themselves, according to new research.

The new Comres poll found that 70 per cent of disabled people were concerned that such a change would lead to ‘pressure being placed on disabled people to end their lives prematurely’

The survey, commissioned by Scope, the leading disability charity, also showed that over one in three (35%) disabled people believed any move to decriminalise assisted suicide would place that sort of pressure on them personally.

Amongst blind and visually impaired people the figure was 49%.

Over half (56%) of all disabled people surveyed also said it would mean that it would be ‘detrimental to the way that disabled people are viewed by society as a whole’.

Richard Hawkes, chief executive of Scope, is reported in the Daily Telegraph as saying: ‘Assisted suicide is a complex and emotional issue, and there are loud and passionate voices on both sides of the debate.’

‘But while high profile lawyers, doctors and celebrities such as Terry Pratchett and Patrick Stewart grab the headlines, the views of the thousands of ordinary disabled people who could be affected by this issue are rarely listened to.’

‘Our survey findings confirm that concerns about legalising assisted suicide are not just held by a minority, but by a substantial majority of those this law would affect.’

‘Disabled people are already worried about people assuming their life isn't worth living or seeing them as a burden, and are genuinely concerned that a change in the law could increase pressure on them to end their life.’

Mr Hawkes also called on the Government to establish a new independent commission to explore the question of whether assisted dying should be legalised.

Lord Falconer’s highly controversial Commission on Assisted Dying, due to report this autumn, has been criticised for being ‘unnecessary, unbalanced and lacking in transparency’.

In particular, whilst the five leading disability rights groups in the UK (SCOPE, NCIL, UKDPC, RADAR and Not Dead Yet) oppose any change in the law, the only disabled person on the panel is an advocate for decriminalising assisted suicide who acts as a spokesperson for Dignity in Dying, formerly the Voluntary Euthanasia Society.

Under the Suicide Act 1961 those who ‘encourage or assist’ someone else to commit suicide may face a prison sentence of up to 14 years. But the Director of Public Prosecutions, in new guidelines issue in February 2010, has indicated that people who are ‘wholly motivated by compassion’ are less likely to face charges.

The fact that there have been very few prosecutions under this new arrangement has worried disabled people's groups who are concerned that some people believe people with disabilities are better off dead and will put subtle pressure on them to end their lives out of 'misguided compassion'.

They need a strong law in place to act as a deterrent in order that they may feel safe. It was precisely for this reason that the group 'Not Dead Yet' launched their 'Resistance Campaign' last June aimed at stopping any further erosion of the existing law.

Last November Margo Macdonald’s End of Life Assistance (Scotland) Bill, which would have legalised both assisted suicide and euthanasia for disabled people was rejected by the Scottish Parliament by an overwhelming majority of 85 to 16 after the general public expressed fears about disabled and other vulnerable people being put under pressure to end their lives.

The latest poll result will come as a blow to Dignity in Dying who have campaigned for a change in the law.

Whilst they have insisted that they want a change in the law only for mentally competent people who are terminally ill, some of their spokespeople, amongst them multiple sclerosis sufferer and campaigner Debbie Purdy, have been disabled but not dying.

This has raised serious questions about their real agenda.

Dog bloggers, MPs expenses, abandoned wheelchairs and an Old Testament prophet

The Cambridgeshire police recently failed to respond to a 999 call about a teenager who was being beaten up with a baseball bat – allegedly because they were short-staffed. But they could still afford to maintain a German Shepherd puppy called Lukas who writes a blog.

Judge Sean Enright said the police response ‘smacked of indifference’. And Matthew Elliott, chief executive of the Taxpayers’ Alliance, commented that: ‘Policing isn’t about PR and fancy websites. It’s about keeping people safe and reassuring the public that crime is being dealt with firmly and strongly.’

Prime Minister Gordon Brown, commenting on the four MPs today charged with theft over parliamentary expenses said he was ‘very angry about what has happened…These are very serious criminal allegations. All criminal allegations have got to be investigated. It’s a matter now for the courts.’

Two views on policing and the courts with which I concur: police are there to ensure public safety and reassure the public that crime is being dealt with firmly and strongly; and the courts are there to investigate all serious criminal investigations.

And yet when it comes to the serious crime of assisting with suicide it seems that the police and the courts have a different view. There have been 134 cases of people now taking ‘loved ones’ to the Dignitas facility in Switzerland to end their lives. Virtually all have been ‘assisted’ but only around ten cases have been investigated and in only two was there apparently enough evidence to bring a prosecution. But in both of the latter no prosecution was brought because it was felt ‘not to be in the public interest’.

The draft DPP prosecution guidelines (soon to be finalised) tell us why. They stipulate that if the ‘victim’ of assisted suicide is terminally or chronically ill or disabled or if the ‘assister’ is a spouse or close relative acting ‘compassionately’ then prosecution is unlikely.

And yet the vast majority of terminally and chronically ill or disabled people do not want to die – instead they want good care and help to live as independently as possible. Furthermore their rates of suicide are not significantly higher than those of the general population. So why should we remove legal protection from them and not others? And why should we exempt ‘loved ones’ from investigation ahead of time when in fact many cases of financial, emotional and physical abuse of elderly and disabled people happen in the context of so-called ‘loving families’. That seems both discriminatory and naïve.

I suspect it has something to do with the value our society gives to vulnerable people and the fact that we live in an increasingly materialistic culture where assisted suicide is seen simply, as Terry Pratchett has demonstrated this week, as just another celebrity endorsed life-style choice.

I was struck today by the story of the disabled fundraiser who was abandoned by ‘friends’ for three hours in his wheelchair on an exposed plateau on Mt Snowdon. He was eventually saved when rescue workers reached him and brought him down. Presumably he had become an encumbrance in their attempt to reach the summit.

The danger of changing the law to allow assisted suicide for vulnerable people is simply that we then will more easily view them as encumbrances holding us back from reaching our financial and life-style goals; and may therefore try less hard to persuade them that they are not a ‘burden’ and that their lives are genuinely worth living – making it in turn more likely that they will ‘choose' the decent thing.

The prophet Ezekiel condemned those in Jerusalem for being ‘arrogant, overfed and unconcerned’ and thereby distracted from attending to the needs of others. Like the Cambridge police and their blogging dog; or the ambitious climbers pushing for the summit. I wonder what he might have said about us today?