Politics

4 July 2018

Letter of the week: End the stigma over Down’s

A selection of the best letters received from our readers this week. Email letters@newstatesman.co.uk to have your thoughts voiced in the New Statesman magazine.

By New Statesman

Aksentije, 14, a Serbian youth with Downs Syndrome embracing his best friend Dusica at a community center in the southwestern Serbian town Aleksandrovac (Photo By GETTY)

In his review of Julian Jackson’s biography of Charles de Gaulle (The Critics, 29 June), Andrew Hussey writes: “We learn about de Gaulle’s… unstinting and constant love for his daughter Anne, who suffered from Down’s syndrome.” Anne de Gaulle did not “suffer from” Down’s syndrome. Having three copies of the 21st chromosome (rather than the normal two) is not an illness, painful or otherwise, and those with the condition do not “suffer” from it.

One of my daughters, aged 23, is a person with Down’s syndrome: she would be amazed to be told that she is “suffering” as a result. Should readers distrust personal anecdote, I refer them to the results of a survey published in 2011 by the American Journal of Medicine. Based on a sample of almost 300 people with Down’s aged 12 and over, 99 per cent declared that they were “happy with their lives”, 95 per cent “liked who they were” and 96 per cent “liked how they looked”. I doubt there would be anything approaching such a level of contentment among the general population.

This is a point of more than semantic significance. The notion that Down’s is a form of “suffering” leads many mothers-to-be to choose to abort when tests reveal that their unborn child has a third copy of the 21st chromosome. Such decisions should not be based on ignorance or fear.

Dominic Lawson
Dallington, East Sussex

Dangerous game

I read Keith Stuart’s article on the video game Fortnite (Digital Native, 29 June) with mounting outrage at his naivety and apparent intent at sugar-coating an escalating blight affecting young people around the world.

His blithe dismissal of the decision of two established medical bodies – the World Health Organization and the American Psychiatric Association – to classify gaming addiction as a mental health disorder smacks of those who dismiss global warming as a hoax. His naivety is revealed by his casual description of addiction as necessitating physiological dependence, without acknowledging the accepted distinction between substance addiction (drugs, alcohol) and process addiction (such as gambling, pornography and now gaming), the latter having experienced logarithmic expansion with 24-hour internet access.

This is not a “new class of disorder”; it has featured, using various labels including behavioural addiction, in the literature for more than three decades. Nor are parents of those suffering to be so airily and sanctimoniously dismissed as “worried” and hysterical because their kids have “played a bit too much Fortnite for a few weeks”, when many are observing their teenagers isolate themselves and stay up for nights on end as they turn their rooms into “Forts”.

Stuart’s sugar-coating is equally egregious. He notes that Fortnite has 125 million players who are funnelling $200m a month to Epic Games in in-game purchases. That translates into $2.4bn a year.

What’s more, Stuart’s fatherly pride at watching his children perform the game’s war dances while evoking nostalgic memories of his own break-dancing as a kid glosses over the fact this is a killing game that uses guns to annihilate 99 people at a sitting.

If Stuart can accurately claim to be a digital native, he needs to stop sugar-coating Fortnite as a “primer into the headspace of the average 14-year-old” and infantilising the problem (and the parents).

Dr Roxane Farmanfarmaian
London NW6

Ignored warnings

Simon Heffer’s warning of revolts against “the disconnected elite” tells only part of the story (“The English Revolution”, 29 June). Altogether, at least 732 people died at Aberfan, Hillsborough, Grenfell Tower, and Gosport hospital. In every case, prior warnings were ignored. Only the courage of outspoken victims uncovered the Rochdale grooming scandal and set up the Child Sexual Abuse Inquiry. Specific public inquiries gave the opportunity to break through the arrogance and self-interest of those in power. Wider social problems have to wait for opportunities.

In the 1930s the teenagers who lived with fathers gassed in the trenches, or with widowed mothers waiting for the “homes for heroes” that did not arrive, saw the humiliations of the means test. They said “never again” and postwar full employment provided the opportunity. Shop steward power in the 1950s and 1960s grew out of the unemployment and mistreatment of labour in the interwar years. The NHS, welfare state and pledge to high employment in the 1944
white paper were intended to end the economic problems of the 1930s. But personal memories remained.

If Brexit goes badly for those who voted for it in the old industrial areas, there will be a reaction. Another ironic unintended consequence.

Joe England
Abergavenny, Monmouthshire

Don’t panic

Laura McInerney notes that “video nasties” were said to have led to the murder of toddler James Bulger (Another Voice, 29 June). But there was no proof of any connection. As Keith Stuart said in his column in the same issue: “With video games… knowledge is always better than panic.”

Mike Bor, BBFC principal examiner (1993-2000)
London W2

Ill at ease

I relish reading Phil Whitaker’s medical column and he has reminded me, many times, that medicine is about the need to see people as the point.

But I do see a darkening shadow in his latest column (Health Matters, 29 June) when he describes the advent of Snowmed coding to categorise conditions.

Hailing from the US, where healthcare is completely commoditised, I see only too plainly a future where coding attracts a political price: what are the risks of certain codes attracting a “dissuasive” tariff if some conditions are regarded as “self-inflicted”? Where the focus is on the coded cost of everything and the true values of our NHS lie crumbling in a new age of the deserving and undeserving sick?

The meaning of the code may well be deeper than the codes themselves: far from the good intentions of capturing all ills.

Alan Taman
Birmingham

Trial tribulations

Your interesting and important piece in the Crumbling Britain series (Observations, 29 June) highlights the difficulties of people getting to courts. As someone who regularly attends court, I can tell you that often, anything up to 50 per cent of defendants do not turn up and warrants are issued. I cannot remember a recent court case in which every defendant appeared.

Of course, this is what the people concerned are expecting, since they know they will be arrested by police and conveyed free of charge to the court and then given a free travel pass to get home, so why bother to use public transport, even if any is available.

However, the costs of the police are not included so presumably the Ministry of Justice can say it is more cost-effective.

Michael Steed
Nettleton, Lincolnshire

Red flag

Steve Irwin-Banks is mistaken when he says that “the Union Flag is only called a Jack when it is flown from the jackstaff of a Royal Navy ship and only when at anchor or moored” (Correspondence, 29 June).

The Flag Institute describes this as a relatively recent idea. In 1902 the Admiralty announced that either name could be used and in 1908 parliamentary approval was given to the statement that “the Union Jack should be regarded as the national flag”.

Gyles Cooper
London N10

Empty vessel

In your otherwise admirable editorial on Boris Johnson (Leader, 29 June) you flatter Johnson by suggesting that he has a “doctrinaire ideology”. He has no ideology. If supporting Remain would secure him the keys to No 10, he would be leading the charge on that campaign. “These are my principles, and if you don’t like them… well, I have others.”

Iain Macniven
Arisaig, Inverness-shire

Never say never

Stephen Bush states that a People’s Vote on the final Brexit deal “won’t happen” (Politics, 29 June). In the current chaotic political climate such emphatic predictions are unwise.

In the end, a People’s Vote could be the best way to get Britain out of the deepening political and economic crisis in which we find ourselves.

Richard Young
Epsom, Surrey

Exchanging words

You do your production team a disservice by publishing Marie Parker’s letter (Correspondence, 29 June). As anyone with a “basic knowledge of English” would know – including those objects of her derision, people for whom it is not their first language – to opt for “sunk” rather than “sank” is merely a stylistic preference. It is not “wrong”, and does not require correction, by her or anyone else.

As for the insistence on “data” being a plural noun, it is certainly an odd hill to choose to die on. As the writer Oliver Kamm has pointed out, there is no “grammatical imperative” that data must be treated as a plural, and its singular form “datum” has anyway become almost antiquated. That usage has changed in the past 60 years is no cause for despair: it is a sign that language is constantly evolving and will continue to do so.

Will Cook
London SE24

Marie Parker’s rant does little to help us mind our language, especially her aggressive stance towards speakers of English as a second language. Her letter shows little understanding of the evolution of language driven by multiple forces.

While it is true to say that some contemporary usage may be unattractive, there is real merit in acknowledging change, particularly when it makes sense.

That she has given up on data, media, etc is a wise decision (I think Marshall McLuhan was the last person to use “medium” with any serious intent at communicating to a wide audience), but why get hung up on “bacteria”? Who, after all, is interested in just one of these?

Mike Davis
Blackpool

Holy land

“What does God look like?” asks Sophie McBain (Observations, 22 June). RF Delderfield, pondering this question in the Seventies with his novels about Victorian England, knew the answer: “God is an Englishman.”

Charles Cronin
London SW11