30 days to go to Ireland’s referendum on abortion on whether or not to retain or repeal Ireland’s pro-life 8th amendment to the constitution which uniquely gives equal right to life to mother and child. Ireland has one of the lowest maternal mortality rates in the world with the 8th amendment….
Everyday we ask people individually or together to go into prayer and medically safe fasting to protect the pro-life 8th amendment to the Irish constitution. We ask catholics in particular worldwide, to consider Sr. Briege McKenna’s call for Masses to be celebrated for the protection of the 8th. (Sr. Briege has an international ministry of intercession for priests and healing).
WHO LAUNCHED INCLUSION IRELAND’S REPEAL CAMPAIGN (PART 2).
Yesterday we talked about Suzy Byrne, the disability / feminist activist and award winning blogger who launched Inclusion Ireland’s pro-repeal the 8th campaign. Inclusion Ireland is the state-sponsored advocacy group for people with intellectual disabilities.
The second disability activist who advocated for abortion rights for disabled women in general and presumably intellectually disabled women in particular as that is Inclusion Ireland’s focus, is Evie Nevin, who advocates for choice to include abortion access.
Evie and her two children suffer from the condition, Ehlers-Danlos Syndrome. A connective tissue disease that is genetic, very painful and which unfortunately there is no cure for. Evie first went public about her condition when asking for financial help to manage trips to the UK to a private specialist unit over there, Ireland having no such unit (1). Having previously worked in journalism, Evie has been unable to due to her condition. Evie started a facebook page / campaign: disabled4choice and has said that should she become pregnant, as she previously had a complicated pregnancy and as hormonal contraceptives do not agree with her, that she would need to have an abortion and should not have to travel for this.
We previously posted on how Dr. John Monaghan, a consultant obstetrician and gynaecologist with extensive experience stated that the 8th amendment never blocked him from taking any action necessary to safeguard / save a woman’s life. Pro-repeal obstetricians such as Dr.s Peter Boylan, state they want abortion on demand to permit them to intervene to safeguard / save a woman’s life and in any case, that it is a woman’s right to choose independently of any risk.
Medical debates aside, Evie now lobbies on behalf of ‘Disabled people together for Yes’, ‘West Cork Together for Yes’ and latterly ‘Inclusion Ireland”s pro-repeal launch so that intellectually disabled woman can access abortions in Ireland. Evie has suffered greatly from her condition and speaks on this at a pro-repeal meeting, Kildare Coalition for Repeal.(2)
However at this public meeting, Evie states: “there have been people who have taken it upon themselves to speak for people with disabilities and families of people with disabilities. We’ve all seen the billboards, we’ve all seen the facebook ads and the trucks on our roads. Perhaps it’s because we’re seen as needing to be protected? But we don’t. We want to be treated like anyone else. We want equal rights. We are not a pawn in anyone’s game. One argument that is constantly used, is that disabled people will be wiped out, should the 8th be repealed and legislation brought in to decriminalise abortion.
In reality this is not going to happen. Statistics from Britain show that 1 to 2% of abortions, are carried out because of a diagnosis of severe disability. Should the legislation follow the Joint Oireachtais Committee’s vote* , only a diagnosis of Fatal Foetal Abnormality will be allowed for abortion after 12 weeks. So this idea of eugenics through the use of abortion simply won’t happen. I won’t mention the issues surrounding Down Syndrome as Down Syndrome Ireland have asked people to keep the condition out of the debate and I want to respect their wishes.”
*(the Irish parliament’s health committee which had a ratio of 6: 1 pro-choice to pro-life expert witnesses and voted half way through the proceedings for repeal of the 8th before hearing all witnesses)
Evie states that pro life activists are speaking out of turn on behalf of the disabled. The reality is that able bodied or disabled, there are people on both sides of this debate, whether either side wishes this or not. A similar argument could be argued by a pro life disabled activist that non disabled pro choice people should not take it upon themselves to speak for him or her if that is Evie’s meaning. Indeed Lord Shinwin, a peer in the House Of Lords in the UK last year attempted to introduce a ban on last trimester abortions from 24 weeks for disabled babies which are permitted to birth even if they only form a small % of the absolute total (3). It failed and so abortions to birth continue in the U.K. for disability and 24 weeks for non-disability . He might have argued that abortion supporters / providers refrain from commenting, but it of course in no way deterred them and they voted against him.
So debate on life and death issues in society that have a wider impact cannot be only for those directly affected however much either side’s activist might wish it. Separately, of all the disability groups that could have launched the repeal campaign, Inclusion Ireland, an advocacy group for intellectually disabled women was chosen presumably by Finian McGrath the pro-repeal minister for Disability, whose daughter Cliodhna, has Down’s Syndrome and the C.E.O. Paddy Connolly.
One wonders how they decided between them, that this particular group, intellectually disabled women was to be the focus group to launch a wider or narrower disability abortion access campaign? It’s difficult not to conclude that these two gentlemen, decided that two very eloquent, well able to go, female public speakers / activists, Suzy Byrne and Evie Nevin, each with different physical disabilities, could best represent disabilites in general and their client base, intellectually disabled women in particular on abortion rights in Ireland. Could this decision making process perhaps also be open to accusations of people taking it on themselves to speak for the disabled, in this case the intellectually disabled? Minister McGrath has already gone on the record that it is the family and G.P. who decide on abortion in crisis pregnancy of intellectually disabled women despite previously talking on the intellectually disabled woman’s right to choose herself…. (see day 33 blog post). More on this tomorrow….
To clarify, the posters and billboards which Evie refers to as being reprehensible show a child with Down Syndrome and state that 9/10 babies (diagnosed antenatally) in the UK with Down Syndrome are aborted.
Actually those of us on the pro-life side, equally do not want to have to have this conversation or look at billboards of Down Syndrome children with grim statistics on display about their demographic demise across the water. We would all much prefer not to have to. But we do have to, as if an advocacy group for those with Down Syndrome can stay quiet about the screening out of Down’s babies across Europe and previous proposals in the citizen’s assembly here to permit their abortion to 22 weeks and can stay silent on how this will likely happen here, then apologies to all unhappy with the posters, but SOMEONE has to name it and a simple image, not of an aborted baby, but of a child with Down Syndrome, does speak a thousand words.
A further point: Evie’s argument that only 1 to 2 % of abortions in the UK are done for disability is incorrect in itself,(4) as the 2% figure quoted in the UK Department of Health’s own government statistics has been closer to double that.
The current roll out of the simple NIPT blood tests (Non Invasive Pre-natal Tests) in the U.K. towards the end of the first trimester, earlier than the mid-trimester screening to date has resulted in sufficient concern from the Anglican communion in the U.K. to meet and affirm the dignity of people with Down’s syndrome in their country (5), though pro-lifers might have wished that they’d called out how individualism coupled with a fear of being perceived to judge, however laudable that is, is leading to eugenics.
The increased availability and accuracy of screening for congenital abnormalities comes at a time when the trend in maternal age continues upwards (6). The % of Down’s babies are higher (4% of over 35s) , the older the maternal age and a trend of increasing numbers of pregnancies with Down’s babies will likely therefore also continue upwards with increased uptake in screening.
From the UK government’s own official stats 2016 on abortion (4), Ground E on the abortion form HSA4, is the ground that permits abortion for severe disability to include Down Syndrome.
“1.15 During 2013, it was brought to the Department of Health’s attention that the number of Ground E HSA4 notifications was lower than the number reported to the congenital anomaly registries. The Department of Health has worked closely with the National Down’s Syndrome Cytogenetic Register (NDSCR) to explore this discrepancy and is now working with Public Health England.
1.16 A matching exercise was carried out between the NDSCR data and Department of Health notifications for 2011, 2012 and 2013 data. Results from the matching suggest that a Department of Health notification was made for about 54% of NDSCR records and that almost half of Ground E notifications are missing.”
The only reason this discrepancy that almost half of abortions of Down Syndrome babies were missing from official statistics, was because the National Down’s Syndrome Cytogenetic Register (N.D.S.C.G.R.).,**, which had almost double the numbers reported to it as to government. The discrepancy was actually picked up by the head of the Christian Medical Alliance in the U.K. (7) and does not appear to have been on the radar for the Dept. Of Health. If half of all trisomy abortions are not reported to the Dept of Health in the UK why is that? The abortion stats document for England and Wales continues:
“In December 2016 the Department of Health wrote to all Fetal Medicine Units, Antenatal Screening Midwives and administration staff reminding colleagues of doctors’ responsibility to submit HSA4 forms to the relevant Chief Medical Officer. The letter was jointly signed by the Department of Health, Royal College of Obstetricians and Gynaecologists and Maternal and Fetal Health Medicine Society. However, despite some progress being made, it is likely there is still a significant undercount presented in the ground E notification tables in this publication, so overall figures related to ground E notifications should be treated with caution.”
Despite writing to all the relevant abortion providers, there was little improvement in the reporting rates. It concludes:
“Between 2011 and 2013, there was a 17.8% increase in the submission of HSA4 Abortion Notifications for Down’s syndrome.” So even after sending letters to everyone possible urging compliance with the HSA4 forms (abortion forms for disability) the yield increased by only 18%. So about 2.36 out of a possible 4% total abortions were now being reported.
Some of the discrepancy appeared to be about who had responsibility for filling in the form when a two stage medical abortion took place.
** The National Down Syndrome Cytogenetic Register (NDSCR) was set up on 1 January 1989. It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down’s, Patau and Edwards syndromes diagnosed antenatally or postnatally.