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

Friday, 23 September 2016

Boo's story

“You told me of darkness where there is so much light.

You told me of sadness and there is so much joy.”

Stories. Everybody has a story. Some chapters are interesting, exciting; other chapters average, mundane, the daily grind. Sometimes we’re told a story by people we trust about what our lives will be like, or what someone else’s life will be like, only to find out that the reality is so very different.

Every so often you read or hear a story which just seems to thump you in the chest. It’s so powerful, it thumps so hard it stops you in your tracks and you feel your eyes begin to flood. That’s the story you’ll read today. It’s not my story; this story belongs to Boo Lowe, and I’m so grateful to Boo for sharing it with us.

“Thank you Sally Phillips for encouraging me speak out...

This is my story ...

To say I was thrilled to find out I was pregnant is an understatement of colossal proportion! I was 44 years old, in my second marriage with two teenage children from my first and had longed for this baby for a long time. As a family, we were all very excited about the new journey we were on. We couldn’t wait to welcome this new life into our world and share new adventures with a new little person.

From the onset of the pregnancy, pretty much, I was sick daily. This was new for me and I remember saying how this felt different to my last two. I took it as a good sign that my hormones were high and even considered that I might be expecting twins or more!

At 12 weeks I was called for my first scan – the energy in the room shifted as the radiographer spent longer than normal without speaking and measuring the area at the back of the baby’s neck.

I was so happy to see my little one...

a little flickering heart...



kicking... took me longer than it should to pick up on the vibes.

We were told that the nuchal fold measurement was bigger than normal – 5.8 instead of below 2. Not knowing what that meant or might indicate, we asked all the questions we could think of.

Genetic disorder was the answer to all. Further testing, how old was I? Have a cup of tea, someone will see you in the other room, do you want the scan pictures? No, it’s ok; you don’t need to pay for them this time…we were given literature on amniocentesis and C.V.S. tests to determine what genetic disorder our baby may have. We were told that although Down syndrome, T21, was the most probable, the high nuchal fold measurement could also be an indication of Edwards syndrome, T18, or Patau syndrome, T13. I asked if there were any other indications that something was wrong with our baby and no there wasn’t but we should really find out soon so we could decide the best course of action.

We drove home in silence, the first time of many journeys to come where we could find no words.

I spent more hours than I can remember googling all the ‘syndromes’ possible and the tests they had advised. I was in a fog but clung on to my little belly and prayed hard that my confusion and worry wasn’t somehow passing through my veins and into this little life.

“I was sinking at a time when I wanted to fly”

The first phone call came the next day…we were invited to meet with a lady who would explain everything to us about testing, the possible results and what we could do about it. The meeting was horrific to me. I remember her describing all the negative issues associated with genetic disorders. T13 and T18 not being life viable and T21 having multiple life threatening, life shortening or life compromising issues that basically added up to it not being wise to continue with the pregnancy. We were told in incredible detail about how the baby would be removed from me. How a regular D & C was not possible after 12 weeks and what the procedure would be. I felt even more sick than usual and numb to all the information that I didn’t want or ask for. Such a dark picture was emerging in front of me. I was sinking at a time when I wanted to fly.

We discussed everything with the children and decided together that I would have the C.V.S. test so that we knew for sure which path we were on. Before I had a chance to let them know of our decision another phone call with a sympathetic voice urging me to not delay in moving forward with this, the sooner the better. I was in my bedroom on the morning of the day after the test when the phone rang again, it was the doctor who carried out the procedure, and she wanted to tell me the news herself, “I’m sorry but the test is positive, Trisomy 21, Down syndrome.”

Long silence. I asked if she could tell me the sex of my baby, yes she could, it’s a girl. Thank you, I said. She told me I would be contacted soon to discuss everything properly but she would tell them to give me time to let the news sink in. I remember, my first reaction was relief that it was Down syndrome and not any other genetic disorder they had described with even darker prognoses.

I sat on my bed and said out loud, “a girl” …then the tears. Of course there were tears, I mourned in all the ways we do when we mourn, with anger, confusion, desperation, the loss of the healthy baby we were supposed to have. I wanted it to be wrong but I also wanted my baby to know that I LOVED her so very much. I felt guilty, so so guilty that I had done this to her, it was my fault. But, with all of it I still felt an incredible bond to my baby girl. I apologized to her over and over, angry at myself for being sad and promising her that it would be ok.

Again we talked as a family and it was the strength of the children that cemented our final decision that same day. When we discussed termination with them they were 100%, absolutely, no way, not on their watch, adamant that that was not an option and I was so relieved and proud of them. This was their sister and that was that.
I want to say that in no way ever would I judge anyone’s choice in similar situations. It is not and will never be my place to pass my opinions onto others but this was our decision, our life choice together.

We were given the option again to terminate and told that it was relatively simple.

It was the next day when we were called again. I told the person on the end of the phone that we had made the decision to continue with the pregnancy and I was asked if it would be ok to meet up so we could properly discuss everything. There we were told of the many medical issues Down syndrome can be associated with. Heart abnormalities, respiratory issues, increased chance of childhood leukemia, early onset dementia, hearing problems, vision problems… do we really want to have to face all of this? We were given the option again to terminate and told that it was relatively simple. Again we said that it was not our choice to do that. More scans were booked in including special heart scans and each one showed no abnormalities but the calls kept coming.

Altogether, from 13 weeks to 24 weeks I received nine phone calls, each one gently and not so gently urging me to look at the medical facts and perhaps think again about our decision. I was told about how the quality of life of my daughter would be not good; she would be a burden on the family, my other children. She may not be able to walk or talk, she may be deaf, blind, have thyroid issues.

It was a battle to fight off the negativity and a fight I am so glad I won. I feel so sorry for other mothers that are maybe not able to see through the darkness to where I am now.

My daughter is four years old, she does have an issue with her heart but no surgery is scheduled. She started at mainstream primary school last week. This morning when I dropped her off a little girl in her class came up to me and told me how she had been hugged lots in the playground yesterday by my daughter. I smiled and she said to me ‘I love her already and we only just met’.

Please, medical professionals, I beg you, understand that Down syndrome is not just what you see. You told me of darkness where there is so much light. You told me of sadness and there is so much joy. My daughter is a worthwhile member of society and already in her four years has changed the lives of everyone who knows her and is capable of so much more than you let me know. I managed to shake of your negativity and look towards a positive future with my daughter forcefully guiding the way.

Thursday, 15 September 2016

Don't screen us out

Guest post: Lynn Murray

As a special, and long overdue, treat for my regular reader (don't say I don't spoil you), I’ve asked my friend Lynn Murray to write a guest post. I’m not going to introduce it further as I don’t want to detract from Lynn’s excellent words.

Lynn is UK Spokesperson for Saving Down syndrome and Don’t Screen Us Out (DSUO). DSUO was launched in January following the announcement that the UK National Screening Committee recommended that the NHS roll-out Non-Invasive Prenatal Testing (NIPT) despite concerns raised by Saving Down Syndrome and others in the public consultation about NIPT. 

@dontscreenusout on Facebook and Twitter
@savingdowns on Facebook, @savingdowns1 on Twitter

Thanks for reading,

If people get a glimpse of what may happen in the future, what effect does it have?  Does it scare them or help them prepare?  Or do they see chaos and look for ways to avoid their fate? 

I considered all this again, after reading Dr. Kelly Cohen's item in the Huffington Post about the about much-heralded new NIPT, an acronym, of course, meaning Non-Invasive Prenatal Test, and, somewhat of a misnomer.  This was an article about the brave new world, the one, where it appears, we can find out much-wanted information about our unborn children, gently ushered through a screening system without any real inconvenience. The Government have even played their part with the advertising of these tests, one Minister being heard to say in Parliament that these tests have “potential to transform antenatal care”.


You see I'm one of the ‘Down’s syndrome campaigners’ Dr Cohen mentioned in her article, who has had to graft somewhat this year, fighting against a well-funded, increasingly popular, idea that we should usher in, the non-invasive world of antenatal testing, post-haste, unquestioningly.  What can go wrong, after all?  Aagh!  The future!  We’ve seen the apocalyptical films and read the books.  We know how this might end.

The promise of a pain-free antenatal screening experience may mean that many more women will take-up these new tests in anticipation of the brave new scientific world, in the hope of walking away in the certainty that they're not going to have a baby with Down’s syndrome after simply offering an outstretched arm for a quick ‘jab’.  In actual fact these new tests will only tell them that they 'probably' aren’t going to have a baby with Down’s syndrome, because the new screen, as I pointed out, is not perfect, it will still have false positive results, false negative results, and failed screens, in the latter situation, previous screening methods may have to be resorted to in order to provide some sort of probability.

"screening often raises needless anxiety, a low probability result abates that anxiety"

If all goes to pharmaceutical plan, more women will choose to have antenatal screening; however, as you may already know, the vast majority of women won't be found to be carrying a baby with Down’s syndrome, and they never were. The Down’s syndrome lottery has few winners.  The new NIPT screening blood test, heralded as an ‘improvement’, which could 'transform' has somewhat of a placebo effect, screening often raises needless anxiety, a low probability result abates that anxiety.  Of those who are found to have a high probability result, they will still need to have an invasive test if they want to know definitively that their baby has Down’s syndrome.  

Do you see why I call it a misnomer?  The Huffington Post article tells us that post-diagnosis parents will be 'supported throughout this time’ by the prenatal system.  Please note that Dr. Cohen never mentioned that parents will be provided with information about Down’s syndrome or counselled through the time of adjustment (great or short, depending on your perceptions of the syndrome).  No - she didn’t, and, in fact, these are some of the issues still not addressed with the advent of NIPT, even though there is now a well-developed disability rights framework in this country.

I understand that receiving a diagnosis is an experience which can be emotionally painful and difficult, but, if you stick with it, and find acceptance, you will ultimately be led towards a most rewarding experience.  This is where the campaigners come in; this is why we've taken to the streets this year. We've, most of us, actually been there, done that, had a diagnosis, unfortunately, for many, what they have found is that being 'supported' has not been as liberating as it might have been if only those delivering the news were more aware of what it can mean to live with Down’s syndrome today or have been able to put themselves in our shoes for a time.

Dr Cohen said in her article that many women choose to continue with pregnancy following a diagnosis, and that is simply, not true. Following a diagnosis that a baby has Down’s syndrome, most women choose not to continue with their pregnancy, over 90%, in fact. That's a frightening statistic considering that we claim to be a diverse society.  So, she is correct, in that, there may not be a rise in terminations, as 9 out of 10 is already an exceptionally high and questionable figure following diagnosis!  Dr Cohen has also said that NIPT will provide a ‘positive’ and that, also isn’t true, as I said earlier, these screening tests provide likelihood not diagnosis.  So, by all means, listen to what proponents of these tests have to say, and then read everything you can on the matter.

"Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose"

It does appear that something is wrong with the screening system but not because, as Dr Cohen, may have suggested that it carries ‘a lot of emotion’ for 'Down’s syndrome campaigners'.  No, au contraire, Down’s syndrome campaigners simply want a world where people are accessing a prenatal system fit for purpose - we’re pragmatists.  

So please, dear readers, discern well, don’t just believe the hype, do your research around Down’s syndrome (if you’re not already living with it) and find out about the support you would expect if the unexpected did happen.  Do you have any misconceptions about what life is like with a baby? Yes, that's right, any baby, because, that baby is very unlikely to meet all your aspirations, it’s best to get real about things now. Being so adjusted may mean that you can accept and enjoy the mess and diversity of life, and, if you are one of the rare winners of the Down’s syndrome lottery, you might get the chance to reap the rewards that are brandished on the hundreds of Facebook pages of those parent campaigners, the pages filled with pictures of children with the extra chromosome and the posts too, declaring the love and joy that families have found down that unexpected road.  These are the people who accepted the future, which is messy, but it is bright. 

Lynn (centre) campaigning at Parliament earlier this year with her daughter Rachel (right) and friend Catherine.

Lynn campaigning alongside David Elliott

Monday, 12 September 2016


I have a beautiful granddaughter, M. I’m sorry to have to tell other grandparents that despite how gorgeous your grandkids are, mine are the cutest and most gorgeous. M is just perfect in every way; an enchanting smile and giggle, the longest eye lashes you’ve seen in your life and a twinkle in her eye that tells me she’s got a wicked sense of humour and she’s gonna torment her grandad for years to come…and I can’t wait!

Of course you may see things differently. Whilst obviously wrong J, you may think that your children or grandchildren are the cutest.

You won’t know about M if you’ve never met her. I can tell you about her but until you meet her you won’t know her. And vice versa. Your little darling may win awards for cute but my experience of him/her will never be the same if I never meet them.

I was with M the other day, she’s nearly two, an inquisitive age; the adventure of life is just starting for her. She’s exploring, seeking out hidden things, she’s realised that if you open your eyes, move around, lift closed lids, turn some pages and pull tantalisingly close handles there are untold treasures to be discovered. Sometimes it’s a good surprise, sometimes it’s not. Life is all about learning when you’re nearly two. I was taking photographs of M and her new baby brother and she was busying herself and entertaining us as she did so. She spied my camera bag and went to investigate. Lifting the lid she found an empty space where my camera goes but next to it she saw something she’d not seen before – binoculars.

It’s interesting when you stand back and watch, this little girl knew instinctively what to do. She put the binoculars up towards her eyes and when I moved towards her she giggled and pulled them away. We repeated this until what seemed like a week later, she never got bored of the game and I never got bored of hearing her giggle. Beautiful.

The funny thing was, she had the binoculars the wrong way round; she was seeing things in a completely different way to the way they were manufactured to be used. But they brought joy to M anyway. Why? Because she had no preconceived ideas about what they were or what they were for. She just accepted them for what they were and they made her giggle.


I had witnessed with my own eyes the glorious beauty of humanity wrapped up in the giggle of a 23 month old infant.

I’ve actually got goosebumps as I sit at my keyboard typing this.

M discovered what so-called wise men, philosophers and ethicists have long since forgotten – to appreciate and accept at face value the simple pleasures life brings if only you are prepared to lift the lid, turn the corner or look through the wrong lens.

I see this simple humanity in Emily; in both the way she looks at the world and the way that she makes me look at the world. It’s as though the world view of Down’s syndrome is that it is foolish to bring someone with Down’s syndrome into the world; philosophers and perceived wisdom would have us believe that we are somehow diluting humanity by allowing those with learning disability to be born. How else would we end up with 90% of babies with Down’s syndrome being aborted? Some of them between 24 and 40 weeks.

But I’ve seen what they don’t see, that it’s the foolish things of the world that shame the wise. Have you seen that?

“But what about the future of the human race?” asks the geneticist determined to do all he can to bring eugenics in through the back door just to prove what a great scientist he is. “If the human race is to stay strong we need to get rid of the weak.”

But I’ve seen what the scientist and the ethicist and their friends don’t see; that the weak things of the world shame the strong. Have you seen that too?

I would go so far as to say that for the survival of humanity we need those that appear to be weak and vulnerable more than they need us in fact. They are indispensable to the survival of humanity as we know it. Seriously do you want to live in a world where everything goes to plan, where we laugh when we’re told to, when live like robots in some kind of Stepford hell?

Or do you want the joy of a giggle from looking own the wrong end of the binoculars?

Do you want your heart to burst with pride because your son has kicked a ball for the first time when everyone said he’d never be able to do it?
Do you want to be stopped dead in your tracks when your daughter tells you with all sincerity and earnestness that you are the best dad in the world and that she loves you 100%.

Yes there are struggles and challenges but that, my friends, is called being a parent. We get no guarantees as to what our children will be capable of doing, both good and not so good, whether they have a disability or not. They will each draw a tear and a smile.

Emily makes me see life differently. As we drove home last night she said, “Look at the sunset, it’s glorious and victorious!” How else could you describe it for goodness sake! I’m happy to look at life through the wrong end of the binoculars just like M, because I get to see life another way. I rejoice because I get to see what so many don’t; the foolish things in the world’s eyes shaming the wise; the weak things in the world’s eyes shaming the strong.

If you know someone with Down’s syndrome, if you’re glad they’re alive, glad they’re in your life, glad that they choose to love you unconditionally, glad that you get to see through the wrong end of the binoculars would you tell them today just how much they mean to you, maybe write it down and pin it in their room so they see it every day. Tell them and then do something to tell the world. Write to your local newspaper or radio station or something else even more creative. If we do nothing I’m afraid we’ll see fewer people with Down’s syndrome in future and that will be no good for anyone. We owe it to those still to come.

Monday, 5 September 2016

i-SPY with my little eye

I spy with my little eye something beginning with …………H










Now you’re being ridiculous. Give in?

Yes. Give in. What is it?


I-SPY - it’s one of those really annoying games where somebody always finds something to see that you don’t. This is actually a shortened, recollection of a game of I-SPY which I was playing with my family when Noah was just a boy. I remember my brothers were not that enthralled with me for coming up with that one but my mum can still remember that one to this day so I must have done something right. I had realised that you can always see a horizon but that it changes depending upon the length and direction of the journey.

Ever since Emily was born I’ve been playing I-SPY with somebody of other. Twenty four years later I’m still playing I-SPY.

I-SPY with my little eye something beginning with P


My turn again. I-SPY with my little eye something beginning with P again.


I-SPY with my little eye something beginning with S and before you say it, it’s not SEN, SEND, Special, Syndrome or even Supercalafragalisticexpealidocious!!!

No this S is for Stress.

Stress. I see that. Do you see that? All too often I reckon. On the care-worn faces of loving, hard-working, dedicated parents who are trying so hard to get someone else to see that which begins with P.

Last one – I-SPY with my little eye something beginning with N.

Give in?

It’s N for Neck. The neck of those people in authority with their heads stuck in the sand and their backsides stuck up in the air. We all know who these people are. They’re doing different jobs in every town but they’re always there. Somewhere. Maybe lurking in a school or college, perhaps they’re shuffling their way through a local authority “career”, they might be dressed as a HealthCare Professional. Maybe they’re in your own family. You know them. Of course they deny it to your face but secretly they are in denial about their own feelings towards people with Down’s syndrome. Denial about what people with Down’s syndrome can achieve.

You may have seen Sunday Morning Live a couple of weeks ago where there was a discussion about the new NIPT test for Down’s syndrome and the ethical debate that goes with it. Rabbi Dr Jonathan Romain of the Maidenhead Synagogue offered a very outdated, stereotypical view of Down’s syndrome, no doubt formed many years ago but despite many letters and emails of complaint, he refuses to enter into a reasonable conversation about this matter and has offered so far only a standard response to everyone.

I see his neck.

What Dr Romain and [insert your own local ostrich here] haven’t realised is that the journey for people with Down’s syndrome is a developing one. It’s a progressive one. It’s a journey of possibility and potential. We have no idea what people with Down’s syndrome are actually capable of because we have failed to put the support in place to allow them to thrive. The survival mentality causes untold stress for so many and that must change. Without such change we are in the dark ages.

Yes, we are on a journey and we are still moving forward; and as we do so, the horizon is constant yet ever changing.  


Friday, 12 August 2016

A Glorious Adventure

Emily was born 24 years ago today, on the twelfth of August 1992. The Glorious Twelfth as it’s known.

What have I learned over the past 24 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Firstly, and most importantly, the birth of a baby, a new life, is a reason to celebrate! If you’ve just had a baby, Congratulations! If your baby has Down’s syndrome you will probably experience a myriad of emotions, hopes and fears, joy and despair, elation and dejection. This is perfectly normal. However, the main thing is to love your baby with all your heart, soul, mind and strength. Love your baby today and each and every day. Consider today, without letting the cares of tomorrow rob you of this moment as a dusty curtain drawn across a sunlit room.

When any baby is born none of us has any idea about what the future may hold. Will she be an artist? Will he be good at sport like his Dad? Will she be a daydreamer? Who will she marry? Will he understand his place in the world? Will he want to travel the world and see all that I have not been able to see?

The answer is, we don’t know. So it’s important to let them just be who they are one day at a time.

Of course, when your baby has Down’s syndrome your thoughts of tomorrow may be a little different. For us it was, Will she live? Will she be able to have a faith? Could she really understand who God is? Will she read? Will she write? Will she be poorly? Will she be bullied? Will she have friends? How will this affect her sister? Who will look after her when we’ve gone? Could she live on her own?

Right from day one, dark thoughts flood our very being like a river cascading down a waterfall.

Of course, we had no way of knowing what the answers to those questions would be or what was ahead of us. However, twenty four years later I can tell you this (consider me a voice from the future if your child is young) I would not trade this glorious adventure for another. Emily having Down’s syndrome has opened up our world to things we would never have dreamed possible. We’ve had opportunities to do amazing things, we’ve become friends with people we would never have otherwise encountered. Some of these friends are true, loyal, supportive, lovely friends and we have never even met them in the flesh – it sounds crazy but it’s true. We are a genuine community which exists to support, to love and to care for one another.  

Emily loves life! She does! She has learned to grasp opportunities that come her way. Her world is so much bigger than many people with no disability who choose to live a small, secure, safe life. You know, the people who consider an adventure to be switching the central heating off in March instead of April.

Emily reads all the time. She loves reading. She can write. She loves to sing and dance and act. She loves to do musical theatre, not in a special needs group (not that there’s anything wrong with that) but in a mainstream group where she can hold her own with the others. She’s got a part time job working in a hair salon. She has a strong faith, she absolutely loves church and understands who God is. She has friends. She can travel independently on known routes. She has hopes and dreams. She wants to get married. She wants to live away from mum and dad.

She knows that she has Down’s syndrome. And whilst Emily understands what this is and what causes it, she chooses to not let it define her. She knows that she needs additional support but she does not allow that to prevent her from doing the things she wants to do.
Babies grow to be children and children to be adults. No two people are the same whether they have Down’s syndrome or not. So I can’t tell you everything will be ok. There are times of struggle and challenge for us all. Tears of hurt, disappointment, tiredness, fatigue, joy, pain, anguish, hope. Tears of pride. When you see your baby, your child, however old they are, achieve something for the first time. This is the same for all our children, whether they have Down’s syndrome or not.

Emily has a riotous sense of humour. She can be silly but so can I. Mostly though she is sensitive, caring, compassionate, aware, discerning and working hard to live life to the max. She is my inspiration to be a better version of who I am. Rather than the world dragging Emily down, she is raising others up. Society would have us believe that people like Emily are weak. If that is true, I don’t want to be strong for there is a beauty made perfect in weakness. There is acceptance, there is tolerance, there is joy, there is hope, there is peace, there is grace, there is love.

Twenty four years seem to have flown in the blink of an eye. Remember to take time to enjoy your children, your family, your friends. 






And remember on the bad days it’s ok to cry, for tears have a healing quality. But don’t live there. Don't allow the worries of the future to permeate your every waking moment. Seek support. Seek those who lift you and they will often not be your family, who may not understand. Families are often the ones we expect to provide the support we need but it's not always the case. You may feel let down. Find a time to sit down and have the conversation where you allow them to speak and for you to listen without interrupting or being defensive. Then switch it round so you get chance to speak. It may take time but you're giving yourself a chance of progress when you agree to listen and to try to understand. It's not always easy but it's worth some effort with those you love.

Finally, surround yourselves with people who “get” you, who love you for who you are, people who support you and who love you unconditionally, just as I know Emily loves me.

I wouldn't trade this life for another. Those who believe Down's syndrome should be screened out of existence are like an ancient people who believed the world to be flat. And the only way this theory was proved wrong was when the brave adventurers left the safety of the known world, the proven and the familiar to seek out that which is unknown, untried, and unfamiliar and they discovered a new world, they plotted a new course and re-drew the map of the world. 

We ARE those adventurers, we need to show the "Down's syndrome denying flat earthers" the bounty of the new world, the REAL world, a world where people with Down's syndrome are educated, pass exams, get jobs, contribute to society and live life to the full. We long to live in a world where they are accepted, included and embraced simply for who they are, not how many chromosomes they have.

The Glorious Twelfth led to a Glorious Adventure. Here’s to a Glorious Future! Happy birthday Emily xxx

Wednesday, 25 May 2016

When tomorrow comes

I’d wanted to see the West End production of Les Miserables for years. The recent film version only increased my longing.

(If you've never seen the film, invite me round, I'll happily watch it again if you provide the popcorn!)

A couple of weeks ago, on a damp Tuesday evening, we happened to be standing outside Buckingham Palace (that’s another story) – all dressed up and nowhere to go. Sheron suggested we pop up to Leicester Square to see if we can pick up a last minute ticket for the show due to start in an hour. So off we popped.

Soon enough we were in the dress circle of the Queens Theatre (where else!), takeaway latte in one hand, box of fruit pastilles in the other – Oh yes people, I really do know how to show a girl a good time!

Right from the start Les Miserables grips you. It grips as a vice grips a piece of timber ready to be planed by a master wood craftsman. Every act, every song another shaving removed. I remained completely entranced, enthralled, involved. Unashamedly I cried pretty much from beginning to end, such is the power of this story.

If you don’t know the story Les Miserables is set 200 years ago in France. It is the story of Jean Valjean, released from 19 years hard labour, he broke parole and spent his life on the run, pursued by his nemesis Inspector Javert. Along the way Valjean receives unexpected kindness and mercy and promises before God to live a better life. Indeed it is the story of Valjean’s redemption and salvation and his determination to extend the same grace and mercy he received, to others.

One night Valjean, having been pursued by Javert for years, had the opportunity to take the lawman’s life. Instead, he gave Javert his life back. Javert, a good man who always sought to do things correctly and justly, could not live with the consequences of receiving such grace; it was alien to all he knew, and subsequently he killed himself. Valjean’s final confession to his adopted daughter of his past life was watched through a lens of tears.
It was everything I’d expected and more.

The finale however, opened the floodgates before everyone rose to their feet, cheered, clapped and roared their appreciation to the amazing cast and musicians.

The finale was so powerful I can still sense how it made me feel as I sit two weeks later typing at a keyboard on a chilly evening in Yorkshire. You see the words of the final song had me wanting to shout Yes! Yes! Yes! Pretty much like Meg Ryan in When Harry Met Sally.

The lyrics are these:

Do you hear the people sing
Lost in the valley of the night
It is the music of a people
Who are climbing to the light

For the wretched of the earth
There is a flame that never dies
Even the darkest night will end
And the sun will rise.

They will live again in freedom
In the garden of the Lord
They will walk behind the plough-share
They will put away the sword
The chain will be broken
And all men will have their reward!

Will you join in our crusade?
Who will be strong and stand with me?
Somewhere beyond the barricade
Is there a world you long to see?
Do you hear the people sing
Say, do you hear the distant drums?
It is the future that they bring
When tomorrow comes!

And right there, through salt stained tears, I cheered. I cheered for the people who are fighting to bring justice for those with Down’s syndrome, and especially for those yet unborn. I sang that last chorus as a rousing anthem for the fantastic parents and families who are fighting to change the way that Down’s syndrome is perceived by others, especially those who deliver the news that “Your baby has Down’s syndrome” and those who would seek to eradicate Down’s syndrome through increased testing, without sharing accurate information
about what Down’s syndrome means in the 21st century.

I sang for my friends, my fellow crusaders who stand strong to overcome the barricades of ignorance; the barriers of discrimination. The world I long to see is one where people with Down’s syndrome are welcomed, accepted, embraced, loved, wanted, included. A world without prejudice, stigma, discrimination, even hate. That’s the future I long to live in when tomorrow comes.

If we don't do something now tomorrow may not come at all for many unborn babies with Down's syndrome. And for those already with us, their lives will be downgraded, they already are downgraded by many, simply because they have a 47th chromosome. The law says they can be terminated at any point up until birth! Babies can survive at 24 weeks which is the cut off point for abortion for those who the world deems "normal". How ironic that we spend billions looking for life on other planets but won't protect that which exists right here on earth. 

It is wrong!

The scientists would say that they are just producing the information and the possibilities and it's up to us as a people to decide how we use that information. Well that's like saying "I'm just building a nuclear facility, you choose if you want to fire it!". There must be an ethical review of abortion in this country. It is wrong that people with Down's syndrome suffer such discrimination in a world where we have learned to tolerate so much yet we have learned to hate so much also.

That's why we fight. That's why we crusade. That's why we sing a song of freedom. That's why we rip apart the barricades. That's why we long for a tomorrow where love triumphs over hate, grace triumphs over law, mercy triumphs over judgement.

When tomorrow comes.



In the distance...

Do you hear the people sing?...

Will you join in our crusade?
Who will be strong and stand with me?
Somewhere beyond the barricade
Is there a world you long to see?
Do you hear the people sing
Say, do you hear the distant drums?
It is the future that they bring
When tomorrow comes!

Join our crusade
*Have your say about the future of ethics and testing for Down's syndrome by completing an anonymous survey for the Nuffield Council on Bioethics. You can complete the survey here.