Monday, 31 October 2016

We are all equal

There has been much written and said about Down’s syndrome over the last month or so leading up to, and since, Sally Phillips’ documentary A World without Down’s Syndrome. Some of what I’ve read has been balanced and fair, recognising that the discussion Sally has started is not an easy one for some to join in but some of what has been printed has been defensive knee-jerk reactionary nonsense from some people who should know better.

I asked friends and work colleagues to watch A World Without Down’s Syndrome and let me know what they thought. Largely these are people who have are representative of the general public, aware that Down’s syndrome exists but not really knowing the impact on family life of having a family member with the condition. The response I received was typically like this one:

“I watched the programme thinking I was prepared. I wasn’t expecting to be so blown away.”

“I had no idea that babies could be terminated right up to birth. It’s awful.”

“I cried like a baby. That was so powerful.”

Over this weekend the government has leaked news that it intends to implement Non-Invasive Prenatal Testing (NIPT) on the NHS from 2018. This is not a surprise. However, it is disappointing that they have not waited for the report due from the Nuffield Council on Bioethics which is due in February 2017 before deciding to proceed. It shows a total disregard for ethics in medicine today and a total disregard for disabled people generally.

It is widely accepted that NIPT will pick up over 100 cases of Down’s syndrome which would not have been picked up on the current screen and that this will increase the number of terminations of babies with Down’s syndrome whilst saving far fewer chromosomally typical babies who would have miscarried following amniocentesis. In effect the government are indirectly approving the sacrifice of many babies with Down’s syndrome to save a few who don’t.

So what’s the answer?

How does the Down’s syndrome community respond to this?

Over the years I have spoken to hundreds, probably thousands, of families with a family member with Down’s syndrome. Very few would say that they wish their child had not been born. The vast majority accept that their lives are far richer for joining this world – a world WITH Down’s syndrome – a world they knew nothing of before but would not go back to how their lives used to be.

And the most important people in this conversation are people with Down’s syndrome themselves. The government has done nothing to engage people with Down’s syndrome in the conversation. Is this really the world we want to live in? It is doubtless a very difficult conversation to involved people with Down’s syndrome. Understandably adults with Down’s syndrome, who may otherwise be very articulate in their speech, suddenly become tongue tied and stumble over their words, unable to express themselves or even process their thoughts coherently, such is the devastating nature of the conversation.

But that doesn’t mean they should be ignored. Far from it. It means we need to step back and think about what it would mean to us if suddenly society wanted to implement screening for likelihood of having a heart attack, stroke or developing cancer. For the technology approved has the capability to do just that and there was a chilling moment in the documentary when collectively we all realised that point. And shuddered.

But surely they will never use this technology for that will they?

Won’t they?

Having been ignored by the government it is imperative that we do all we can to change society’s understanding of Down’s syndrome. Yes that includes government and people in positions of power, doctors, consultants, midwives, etc. But it also, and more powerfully, involves your next door neighbour, the people in the street, work colleagues, the woman walking her dog in the park – this is where change happens, in the hearts of ordinary people.

We need to show that people with Down’s syndrome are involved in everyday life (as they are) and whilst there are undoubted challenges, we must remember that no child is born with a certificate of guarantee that they will remain free from being tarnished in some way. We can’t go around calculating lifetime cost of one human being against another. How would we offset this in the credit column? How much is it worth when someone makes you smile? How much is it worth when your heart feels like it will literally explode because your child has done something to make you proud? How much do we deduct from our own account when we lie, cheat, steal, discourage, disappoint, hurt, backbite, etc, etc, etc?

Any credit I have gained I would gladly transfer to Emily’s account. However, she doesn’t need me to. She is more in credit than I!
No, it is impossible to measure worth in pounds and pence. We are all equal.

Tuesday, 25 October 2016

The Moonstone

Last year Emily had an opportunity to go on set of a BBC adaptation of David Walliams’ book Billionaire Boy starring John Thomson, Catherine Tate and Warwick Davis. She even got a brief walk on part as an “Extra” (well she does have an “extra” chromosome don’t you know!). It was shown on BBC1 on New Year’s Day.

Whilst Emily enjoyed being involved and seeing herself, briefly, on TV, we thought that would be the end of it. However, a few months ago we were contacted by Joanna, Producer of Billionaire Boy, who was just starting to film an adaptation of another book for the BBC and as they were filming in Yorkshire wondered if Emily might like to get involved.

Er…yes please!!

With John Thomson on Billionaire Boy

So we went off at “too-early-o’clock” to North Yorkshire and Emily was whisked off to costume and make-up and emerged transformed.

This, ladies and gentlemen, is The Moonstone by Wilkie Collins, generally believed to be the first detective novel in the English language, and now to become a  BBC costume drama set in the mid 19th century. Oh yes! How many of you lovely people would love to be in a BBC costume drama? Well Emily has done it. It doesn’t really matter what ends up on the cutting room floor and what may be shown on screen, the fact is she’s done it and enjoyed it.

Once again she was alongside the brilliant John Thomson (Pete from Cold Feet). As we walked off set to grab a bite to eat at lunchtime John turned to Emily and said, “Did you work with me on Billionaire Boy?”.

“Yes, I did”, replied Emily.

“I thought I recognised you. It’s lovely to meet you again”, said John.

A genuinely lovely man. Thanks John, that meant so much.

It was a long day for Emily, there was lots to get through and everyone worked really hard. At the end of the day we were whisked back to base to get changed and we were on our way home. This was an insight into the surreal world of television. It’s really not glamorous but it was really interesting to see what goes on behind the camera.

Emily’s scene was in Episode 5 – if you squint hard, you might just spot her – here’s hoping!

Watch out for other big names like Sarah Hadland from Miranda and the wonderful David Calder. With grateful thanks to all at King Bert Productions for a memorable day.

**The Moonstone begins on Monday 31st October at 2.15pm and will be shown across five consecutive days on BBC1.

Wednesday, 5 October 2016

Think Again

The 1960s were the age of freedom and individualism. It was a time when hitherto social taboos of racism and sexism began to be challenged and popular culture was changed forever through the “countercultures” of sex, drugs, fashion and music. Pushing the boundaries to excess and beyond, they say if you remember the 60s you weren’t there! It's also when I was born. 1968 to be exact.

But the 60s were also a time of restriction, of violence, of war. The threat of nuclear war hung heavy throughout the decade. It was a time of fear and political change.

I’ve recently seen old film archive and family photos which show just how long ago my childhood of the 60s and 70s appears to be when viewed from 2016. There were certainly far fewer cars on the roads than they are now, not surprising when it only cost 2p for a bus fare! Three television channels was apparently all we needed and many of the films we watched were in black and white. Our telephone landline was in a red box at the top of the street, next to the fish and chip shop. Some shops had half-day closing and none of them opened at all on Sunday.

My grandson is just over a month old. In a few years, I’ll tell him about life when I was young and he’ll say, “Grandad, you are SO old!” and I’ll say “Yes. I am.” For him, looking back to the 60’s will be akin to me in my childhood looking back to the Victorian era. Unrecognisable.

During my lifetime we’ve seen technology take us to places we would have thought unimaginable back then. Not only does television now offer up hundreds of channels, we can watch it on the move on mobile devices; the same mobile devices which were once just a mobile phone, which were in addition to our home landline, which in turn were welcomed with amazement that no longer did we have to walk to the top of the street to make a call. Back then we actually walked to a friend’s house to knock on the door to see if they were coming out to play. Now we communicate instantly through any one of a number of apps, email, text, etc.   

The advancement of technology changes society, there can be no doubt about that. Some would argue that society drives demand for technology but this is rarely true. How many of you were so disgusted with the capability of your iPhone 6 that you demanded Apple bring iPhone 7 out within such a short space of time? And while you’re buying your shiny new iPhone 7 you can be sure that Apple have almost finished iPhone 8 – not because you already know what your iPhone 7 can’t do but because they’ve developed the technology to improve it.

So often technology drives society and we are blinded by the light of the next new shiny thing that we fail to see how small subtle changes over a period of time leads to accepted social norms and expectations.

Scientists will always strive to use technology to create something new, to push the boundaries, to work out what’s possible. However, once they’ve developed something it’s up to us to choose how to use it or whether it should be used. Remember the 60’s? We came so close to nuclear war during the Cuban Missile Crisis and the tense stand-off between America and Russia occurred because actually nobody wanted to press the button because we’d already been awakened to the devastating effects of nuclear weapons by what happened in Hiroshima and Nagasaki. What would life look like now if one of them had pushed the button? What effect on future generations would that have caused?

Ethics and scientific technology cannot be divided. As scientists develop more and more tests to screen for genetic conditions for babies in the womb, we have to be a responsible society and create a framework of ethics around that technology.

  • Is it good technology?

  • Should it be used?

  • Why should it be used?

  • How should it be used?

  • What else needs to be done to support the potential consequences of using that technology?

These are all vital questions. By simply allowing the use of technology without considering its implications is irresponsible and does not protect the current and future generations. Doing nothing leads to small subtle changes that eventually change the fabric of society. Social constructs are created through these changes. To ignore the ethics of the use of pregnancy screening technology would by default grant consent to its use and the potential unintended consequences of its use. Today it may be Down’s syndrome that it is used for but shortly this technology will be developed for other medical conditions and non-medical markers which determine the characteristics of each individual that makes up the human race.

What is happening NOW and our response will not only determine what the future will look like but it will also define us and what it means to be human.
It's time for us to THINK AGAIN!

Please watch “A World Without Down’s Syndrome?” Wednesday 5th October 9pm on BBC2