Saturday, 10 February 2018

General Synod day 3

Updated Saturday night, Sunday morning and Monday evening

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morning
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Links to texts of the Safeguarding presentation at General Synod

Harry Farley Christian Today Church facing years of shame as extent of abuse emerges, bishop warns

Harriet Sherwood The Guardian C of E faced 3,300 sexual abuse claims, figures reveal

Tim Wyatt Church Times Safeguarding: we’re doing better, Synod tells sceptical survivors

Olivia Rudgard Telegraph Clergy still believe some complainants are ‘simply out for the money’, abuse expert tells church leaders

Olivia Rudgard Telegraph Informal communities for nuns and monks becoming more popular - with daily prayers over Skype

Official press release General Synod affirms dignity and humanity of people with Down’s Syndrome
[see below the fold for the text of the motion as passed by Synod]

Madeleine Davies Church Times ‘Every human being is made in the image of God’: Synod unanimously backs motion on Down’s syndrome

Olivia Rudgard Telegraph Rate of Down’s syndrome abortions in UK and Europe is akin to Nazi eugenics, Church of England’s General Synod hears

Press Association (in The Guardian) C of E backs motion valuing people with Down’s syndrome

summary of the day’s business from Stephen Lynas: It’s nine o’clock on a Saturday…

video recordings
morning session
afternoon session

Motion on Down’s syndrome as passed by General Synod

That this Synod, valuing all human life equally and celebrating the advances in medical technology which help alleviate human suffering:
(a) affirm the dignity and full humanity of people born with Down’s syndrome;
(b) request dioceses, parishes and the NCIs to work to review their activities and the provisions they make for people with Down’s syndrome and their families, to ensure a real welcome for all;
(c) support the continued development of ante-natal care including access to information that new, safe screening techniques provide; and
(d) call on Her Majesty’s Government and relevant professional bodies to ensure that parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information with regard to this condition, and be provided with full information about the support available and the future prospects of those with this condition, with no implied preference for any outcome.

Posted by Peter Owen on Saturday, 10 February 2018 at 12:45pm GMT | TrackBack
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Categorised as: Church of England | General Synod
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from the website of the National Down Syndrome Society:

“Down syndrome” is the preferred spelling for this condition, rather than “Down’s syndrome” or “Down Syndrome.” The National Institutes of Health and the American Medical Association, as well as many medical dictionaries and encyclopedias, prefer “Down syndrome.”

Posted by: John Sandeman on Monday, 12 February 2018 at 12:42am GMT

I think I'm right in saying that "Down syndrome" is US usage. UK usage is "Down's syndrome".

The National Down Syndrome Society is a US body. See the Down's Syndrome Association https://www.downs-syndrome.org.uk/ for a UK body.

Posted by: Simon Kershaw on Monday, 12 February 2018 at 10:43am GMT

Worldwide “Down” is most commonly used in English speaking countries. Using the possessive implies that it is named after someone who lived with the condition. But I guess the usage stuck in the UK.

Posted by: John Sandeman on Monday, 12 February 2018 at 3:49pm GMT

I don't think that it implies it is named after someone with the condition. It is named after John Down, who described and classified it.

Posted by: Simon Kershaw on Monday, 12 February 2018 at 4:22pm GMT

“It is named after John Down, who described and classified it”

Indeed, like Kaposi’s sarcoma, Bright’s disease, Addison’s disease etc. etc. It’s a common convention in the medical world.

Posted by: Fr Andrew on Monday, 12 February 2018 at 6:36pm GMT

In this country - this is a British site right ? - Down's Syndrome is what it is.

c.f. https://www.downs-syndrome.org.uk

What is said and written in the USA is up to themselves.

But given that JL Down was from Cornwall, one might have thought the UK usage might carry some weight.

https://library.down-syndrome.org/en-gb/research-practice/06/1/john-langdon-down-man-message/

Posted by: Laurie Roberts on Tuesday, 13 February 2018 at 4:01pm GMT

And in the UK, 'Down Syndrome' might imply that the person has depression.

We usually capitalise 'Syndrome' if it's part of the title of a condition - or at least we used to, it may be changing.

And regardless of the title, it's good that Synod passed the resolution.

Posted by: Janet Fife on Tuesday, 13 February 2018 at 4:54pm GMT

Does the adoption of the resolution have any implications for the approach to antenatal care that the Church should be espousing? If it has merit, then surely the implication is there that prenatal testing with the object of identifying and terminating pregnancies that display this condition is inappropriate. Either human value is absolute and cannot be determined by another (even the mother) or it is relative (and we head down the road that ethicists like Peter Singer have mapped out). One of the particularly sad features of contemporary Anglicanism - in my opinion - is that a consistent pro-life position (on the death penalty AND abortion) upon which all can agree seems to have become almost impossible to articulate (though Rowan Williams has managed it).

Posted by: Jeremy Bonner on Wednesday, 14 February 2018 at 10:05am GMT

Does the adoption of the resolution have any implications for the approach to antenatal care that the Church should be espousing? If it has merit, then surely the implication is there that prenatal testing with the object of identifying and terminating pregnancies that display this condition is inappropriate. Either human value is absolute and cannot be determined by another (even the mother) or it is relative (and we head down the road that ethicists like Peter Singer have mapped out). One of the particularly sad features of contemporary Anglicanism - in my opinion - is that a consistent pro-life position (on the death penalty AND abortion) upon which all can agree seems to have become almost impossible to articulate (though Rowan Williams has managed it).

Posted by: Jeremy Bonner on Wednesday, 14 February 2018 at 10:35am GMT

Fighting the culture wars on the gay marriage front has done the Church of England immeasurable harm. It's hard to see that opening up a second front on abortion, the other wedge issue amongst US evangelicals, is anything other than another route to irrelevance. Why not try creationism as well and go for the trifecta?

What's being argued is that mothers who find themselves carrying a child who will require long-term care (yes, there are children with Down's who do not, but they are very much an exception) should accept their fate; the CofE doesn't appear terribly interested in the results of virtue-signalling on abortion, so the mothers - and it will be mothers, because divorce in the aftermath of the birth of a handicapped child is very common - should just accept their lot. If the motion were accompanied with concrete proposals on dealing with this, it would be better. But no.

Posted by: Interested Observer on Wednesday, 14 February 2018 at 10:56am GMT

Moving beyond the truly vital question of terminology which dominates this thread (!), Jeremy Bonner is asking the right question, and I think sadly the debate gave the wrong answer.

https://www.psephizo.com/life-ministry/are-people-with-downs-syndrome-truly-valued/

Posted by: Ian Paul on Wednesday, 14 February 2018 at 12:53pm GMT

The statistics are not as straightforward as implied by Interested Observer. From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624231/
Quote
In their meta-analysis of thirteen studies of parental divorce, Risdal and Singer (2004) found a higher rate of parental divorce or marital discord among parents of a child with disabilities compared to parents having no child with disabilities, but the overall effect size across studies was d = .21, indicating a small effect.

....

However, in a large-scale, population-based study, Urbano and Hodapp (2007) found significantly *lower* divorce rates among families of children with Down syndrome (7.6%) and families of children with other birth defects (10.8%), compared with those of children with no identified disability (11.2%).
Unquote

Posted by: Jamie W on Wednesday, 14 February 2018 at 1:17pm GMT

Jamie, it would hardly be a surprise if Down's currently has lower rates of divorce: it's routinely screened for and the set of people who will either refuse the screening or decline a subsequent abortion are likely to be the same people who will have strong objections to divorce. That difference would be removed if the screening were to be made less available, and Down's would then revert to being a general disability in the population, rather than as it is limited already to a group which is not homogenous with the general population.

However, the study you cite [1] is hardly convincing and certainly doesn't bear the weight you place on it. From the abstract: "In this study, we examined the nature, timing, and correlates of divorce in families of children with Down syndrome (647), other birth defects (10,283) and no identified disability (361,154)." But immediately there's the caveat: "Mothers and fathers of children with Down syndrome were much more likely to divorce if they were younger, had not graduated from high school, and if fathers were less educated and lived in a rural area. "

Well, there are good reasons to think that the 647 are not representative of the control population, see above, but I wonder where they got this data from? Ah...

Pulling the actual paper reveals:

"To obtain the study dataset, we examined of- ficial records for the entire population of children and parents from the state of Tennessee between 1990 and 2002, namely, 5.8 million people. The state features a diverse population...Much of Ten- nessee’s land area including 67 of the state’s 95 counties isdesignatedasruralbythefederalgov- ernment, although the state also has five large cit- ies: Memphis, Nashville, Knoxville, Chattanooga, and Clarksville (all with populations over 100,000)."

And reading on, we see that the authors spotted the obvious confounder about people making an informed choice to continue with Down's pregnancies:

"As shown in Table 1, simple comparisons show several differences in parents, families, and children across the three groups. On average, fam- ilies of children with Down syndrome had more children, and parents were more highly educated and older at the time of the index child’s birth."

I'd take a hell of a lot of convincing that the social and religious mores of a rural state in the Bible Belt in the 1990s, with all the confounders around income and religion that implies, viewed through the lens of about fifty divorces over a decade, tells us much about English in 2018 (or much about anything, really).

Because that's what this paper is: a massively elaborate statistical treatment of five divorces per year.


[1] Urbano RC, Hodapp RM. Divorce in families of children with Down syndrome: A population-based study. American Journal on Mental Retardation. 2007;112(4):261–274.

Posted by: Interested Observer on Wednesday, 14 February 2018 at 3:44pm GMT

The use of the word 'mother' in relation to screening (see above) is both inappropriate and question-begging, and the word need in this context is not 'mother', but woman.

The position of such words as 'baby' is in a similar situation, many would say.

Pressure exertion on women contemplating pregnancy, and moral blackmail, will do nothing to promote the lives of those who, 'have' Down's Syndrome, among other signifiers of their humanity.

Is the Synod setting up a fund for the support of parents, families and individuals 'with' Down's Syndrome ?

Posted by: Laurie Roberts on Thursday, 15 February 2018 at 3:06pm GMT
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