Wednesday, 21 March 2018

Looking back

I didn't know anyone with Down's syndrome. I hadn't met anyone. I hadn't been around anyone. I didn't know anyone who knew anyone with Down's syndrome. All I knew was what I'd seen, huddles of hooded anoraks trudging one behind the other supported by a bossy carer or two.

That was until 1992.

Emily was born in 1992 but Emily wasn't the first person with Down's I met. When Sheron was six months pregnant we were invited to a work colleague's home for a garden party. Lots of people were there, including my colleague Harry's daughter. She was six years old and had Down's syndrome. I'd had no idea. She was adorable and I remember charging around the garden with her on my back. We had a great time. That was when I realised that Down's syndrome itself is merely a condition that affects us more than the person with the condition. It didn't seem to bother her at all and my pre-conceptions were blown out of the water.

Then in August Emily was born. And I thought back to that day in the garden and I wondered at such a coincidence.

John, the minister of our church, came to visit us in hospital, with his wife Jill. We hadn't realised but Jill is a twin. Her twin's name is Alison and Alison has Down's syndrome. I wondered at such a coincidence.

We received tremendous support from Harry and from John and Jill. What an amazing thing it is to receive support from people who can show empathy and compassion because they have some idea of what you need and when you need it.

The following year I was given a transfer to work at a different branch of the bank I worked for. This was disappointing as I had received great support from Harry and I knew it wouldn't be the same. My new line manager was called Nigel. I didn't know him, although I had heard of him. It turned out that Nigel's daughter had Down's syndrome. And I couldn't help but wonder at such a coincidence.

Looking back I am amazed that just at the right time, just when we needed it, we received support from three families who guided us through the choppy waters of those first few months, as we navigated the way ahead into an uncertain future. I can't help but be amazed that they just "happened" to be there. I fully believe they were woven into our lives with precision on a tapestry much, much bigger than I could possibly comprehend. 

All these years later I'm still in touch with John & Jill. Alison is beautiful. If you read to the very end you'll be rewarded with a photo. 

Jill: "I still remember my first cuddle with Emily and feeling how she would be ok. I know I'm privileged to have grown up knowing that a person with Down's syndrome is no different to anyone else. Alison is getting the most amazing care, they love her to bits."

Those three people with Down's syndrome were strangers to us, yet had influenced the lives of the people who would give us the support we needed. That blows my mind. And now I wonder who have we had contact with in the last 26 years who have received support, even without us knowing, because we were able to offer them some comfort and strength because Emily had first given it to us.

What a legacy these people with Down's syndrome leave, every single day of their lives their influence causes hope to ripple around the world. If you’re reading this and have just received unexpected news that you’re having a baby with Down’s syndrome or if you’re a new parent, seek out support, there’s someone nearby who has been prepared for a time such as this. You might already know them. Now what a coincidence that would be...

Monday, 14 August 2017

We ARE the good news

TV, radio, newspaper, social media, it doesn't matter how you get your news these days, it always seems to be bad news. Murder, terrorism, nuclear threats, war, white supremacists, the rise of the far right, the list goes on.

Don't focus on the bad news, as the world creaks and groans from evil on this side and that. 

Focus on all that is good.

Look for the miracle.

What is your miracle?

Maybe it's the gurgle of a baby, 
the warmth of the sun on your skin, 
the smile from a stranger, 
the colours of the sunset, 
the wind on your face, 
the laughter shared with friends, 
the crackle from a campfire
the wonder of a shooting star,
the melody of your favourite song,
the joy that comes from seeing someone achieve something that others said they wouldn't, or couldn't.

Miracles don't always come with water turned to wine or a bread and fish picnic feeding 5,000.

Look around. 
See the miracle.
The miracle of life which exists right where you are.

Don't be held captive by fear.
Don't allow doers of evil deeds to claim another victim, to paralyse you, to prevent you from making a positive difference in this hurting world. 

Look for the good in others.
But more importantly, look for the good in yourself.

Why is there so much evil you say?

Why is it like this in 2017?

How have we not learned the lessons from history which teach that intolerance, racism, xenophobia and
the desire to please only 'myself' whatever the cost to others leads to a world of separation, division and hatred?

We need to respect one another.
Trust one another.
Love one another.

We need to accept one another, without bias, without judgment, without dehumanising, whether we understand each other or not.

I look around at this world, I see people with disabilities, and learning disability in particular, who are treated as second class citizens, thought of as undeserving even of equal rights, some would even choose to refuse them the sanctity of human life.

Why is it like this in 2017?

People with learning disabilities are often much more of a joy to be around than those without a disability, the typically developing human. We can all learn something from each other. We just have to open our eyes, open our minds, open our hearts.

You can change the world.

We can change the world.


Where all are included, accepted, respected and, yes, loved for who they are.

We are the miracle. 
We are the good news. 
We are in this together.

Together we can make a melody so beautiful that our song will overcome the creaks and groans of the world. The tune is love, the words are written on your heart. 

Will you join the anthem?

Saturday, 11 March 2017

My Feral Heart

How do you like your movies? Are you the type of person who likes the crash bang wallop of big budget special effects with epic battle scenes of monumental proportions? I’ve got to say they are not my cup of Darjeeling. I’m much more of a sucker for good old fashioned storytelling. I like a film that makes me think, something that is emotionally stimulating, a film that asks my imagination to fill in some of the blanks.

That’s why when I saw My Feral Heart it ticked all of the boxes I want in a film.

If you haven’t seen it yet I want to challenge you, as you read the last line of this blog post, to follow the link you’ll find there and book in to see it. You won’t get another chance. It’s not on general release, it’s available one more time in selected cinemas to celebrate World Down Syndrome Day and you have to book in advance by Sunday 12th March! (with apologies if you’re reading this on Dave or On Demand after that date!)

One of the UK’s top film critics, Mark Kermode, made it one of his top UK independent films of 2016. Watch a short clip of him talking about it here *SPOILER ALERT*

What makes the film fascinating for me is the lead actor is a man with Down’s syndrome, Steven Brandon. He plays the part of Luke exceptionally well – you will not believe this is his first film. He was nominated in the leading actor category  of the BIFA film awards alongside Hollywood heavyweights like Michael Fassbender! Just incredible!

Steven Brandon proving to me his lion tattoo was for real!

You can read more about My Feral Heart on the website here but PLEASE PLEASE PLEASE, do yourself a favour and book in to see this film now – there are 50 screenings planned across the UK next week and they will only go ahead if enough people book in to see it. Why not buy a ticket for you AND someone else then take them along as part of raising positive awareness of people with Down's syndrome. If you belong to, or help run, a local Down's syndrome support group, why not buy a bunch of tickets and give them away to make sure that the screening happens AND again raising awareness. £1 from the sale of every ticket goes to the Down's Syndrome Research Foundation in aid of Don't Screen Us Out.

Get involved! You won't regret it I promise! Even if you're usually a big budget, battle scene kinda cinema goer, try this and if you don't like it you can come over to mine and I promise to watch the whole of Bored of the Rings with you! (yawn)...

Here's a little trailer for this beautiful film!

I have so much more to say about My Feral Heart, including the inside story straight from the mouths of Jane Gull (Director), Duncan Paveling (writer) and James Rumsey (Producer) but I want you to go and see the film first!

Friday, 3 March 2017

You want to work?

Have you got your bag?

I have.



Bus pass?

Got it!

And with that she says goodbye and leaves to walk up the hill, across the road, round the bend, up the next street, across the dual carriageway to the bus stop. She patiently waits and then boards the bus and takes the short journey to the next village, where she goes through the underpass and into the hair salon.

To work.

This could be any young woman. This is the way it should be when school is over, college is almost done and you’ve got a spare day in your week. Get a job. Earn some money. Find out what it’s like in the real world. Be independent.

But this isn’t anyone. This is someone with learning disabilities. Someone with Down’s syndrome. This is Emily. My daughter.

Emily loves to go to work. She loves the feeling of being an independent young woman, even if for only a short time of the week. It’s where she can learn new skills, gain confidence, interact with the general public. She knows that this is the way it should be. She feels motivated. She has purpose. She has a strong feeling of self-worth. She is valued. Appreciated. Part of the community.

She belongs.

Irrespective of our background, ethnicity, gender, sexual orientation, colour, disability, however we might choose to divide ourselves, that’s what we all want really isn’t it? To be valued. To belong.

“To LIVE, to LOVE, to LEARN and to LEAVE a legacy” – according to Stephen R. Covey

Yet we know that for people with learning disabilities, the opportunities post formal education are very limited indeed. There are some marvellous facilities in small pockets of the country which provide opportunities for the learning disabled to access good quality training but there are even fewer opportunities to find a job with any acquired skills. We live in a country where profit is king so why would any employer want to employ someone who is slower than their contemporaries? Why would they take on someone who may well give them health and safety headaches, additional risk assessments, potentially increased insurance premiums?

If an employer were to buck the trend and actually employ someone with a learning disability, they know that the law enforces a minimum wage, which they are obliged to pay, regardless of whether they get value for money. Is this fair to the employer? Is it fair to the other staff on the same rate of pay? Won’t there be disagreements? Fall out? If the balance sheet is king, aren’t the learning disabled just another liability rather than an asset?

I’ll tackle what Emily’s employer and fellow staff members think about all of this in another post, for I fear there is insufficient room here to do this tale justice.

I have met a number of parents who are happy for their young person with LD to work for nothing because they believe that if they pushed for pay that may bring the placement to an end, which would be to the detriment of their family member. Better to be out of the house, part of the community and doing a job, even if without pay, than to be sat at home, on the iPad, watching endless re-runs of Homes Under the Hammer and still get paid nothing.

Isn’t it?

And there are others who would campaign for a change in the law to enable employers to pay below the minimum wage to people with LD. This surely would be an incentive to employers to give a chance to someone with a LD, knowing that they’re not “gambling” quite so much on the roll of the dice that is the world of learning disability.

Wouldn’t it?

Surely people with learning disabilities just want to work. They want that sense of purpose and job satisfaction. They want to be like their peers and get a wage packet at the end of the week. It doesn’t matter if it’s a little bit less in there than their co-workers.

Or does it?

I agree that something must be done to change the current position where 94% of adults with a learning disability are NOT in paid work (Health and Social Care Information Centre 2015). Day centres are closing. Adult social care is in crisis across the country. The state is turning its back on people with learning disabilities and we should all be disturbed by this. Suggestions that we should allow a lower minimum wage to get the learning disabled into work come from a place of vision of the future and desperately looking for solutions.
But how can we campaign for equality when it comes to education, health and other societal norms but then go and undo that good work by suggesting to employers that the LD can be paid less because they will produce less, immediately giving employers and society in general the impression that they do not carry the same value. Literally worth-less. We can’t. We just can’t. We must start from a position of equality and find, or create, work opportunities which combat weaknesses.

When I started work as a teenager I was on a Youth Training Scheme at Barclays Bank where I was paid the princely sum of £25 per week, whereas my colleague Peter, doing exactly the same job, was on staff and paid three times as much. I was better at the job than he was and everyone couldn’t quite believe the unfairness of it all. Barclays were laughing. They were getting all of the benefits of a permanent member of staff without paying for it.

And the same situation wouldn’t be fair for our young people either. How do we know that they won’t be able to do a job as well as someone else? We don’t. According to Mencap, research has identified various barriers to people with LD getting and keeping a job. These include:
  • ·         Negative attitudes and low expectations of people with a learning disability, their families and carers.
  • ·         Negative attitudes and low expectations of employers.
  • ·         A lack of flexible, personalised employment programmes
  • ·         Unfair treatment, discrimination and bullying in the workplace
  • ·         Issues relating to access and support in the workplace

(Watts et al 2014; Roulstone et al 2014; Hall and Wilton 2015; Coleman et al 2013; Meager and Higgins 2011)

Essentially, it comes back to low expectations and insufficient support to enable a work opportunity to thrive. Resulting in “failure”.

Oh, and if this sounds familiar, it’s what you’re probably going through, or been through, with your young person at school. The same lack produces similar results, just in a different setting.

It’s time to raise the bar people!

…(To be continued)

Saturday, 18 February 2017

Katie's Triumph

Every now and again we get a snapshot of someone else's life. We don't get the whole picture, how could we? But what we do get is a brief insight, a flicker, a window into their world. This post is such a snapshot. It was a short Facebook post between friends but I felt these words needed sharing more widely, deserving of a larger audience. So with her permission, I'm bringing Colette's words to the world - a world very much in need of inspiration, of light, a world which needs to know the existence of such faith, hope and love. These are words which challenge the world view of perfection, whilst revealing the beauty of an overcoming spirit.

*Colette is mum to Katie who is 19 and has Down's syndrome.

Katie went to a national Stagecoach audition/workshop for their annual summer show today. We got to watch the performance at the end. And there was my Katie, and she did SUCH an amazing job. Ok, she was at times a little behind the beat, but at times she was dead on, and ok, she was at times a little out of tune, but at other times she was in tune.

And I looked at her brilliant smile and beautiful trusting heart that must have worked so hard to get that all together in quite a short rehearsal period, and I thought, that is still not good enough for the world. It still won't be enough to get her in. And there’s no criticism of Stagecoach here, I was really glad that they accommodated Katie. But I know that if they gave Katie a place it would be taking it away from someone else, who can perform better, more in time, more in tune.

But I just thought....wouldn't it be lovely if that wasn't how the world worked, that you weren't only accepted if you were their idea of perfect, because actually looking at her there, she was truly amazing.

She wouldn't be talking, let alone singing.  
She wouldn't be walking, let alone dancing.

So, my eyes welled up and I was sad, sad about the way the world is, sad that people aren't kinder and don't value the important things. But then, with tears rolling down my cheeks, I realised that actually, that was a triumph for Katie today. She wasn't supposed to be there, she has come through three lots of open heart surgery to be standing there. If the predictions were to be believed, she wouldn't be talking, let alone singing. She wouldn't be walking, let alone dancing, with high kicks and in time (mostly) with a group of typically developing peers.

So as I stood there applauding for all I was worth, I just wanted to shout, "Just look at her though! She has Down syndrome, and LOOK at what she has just pulled off. She may not be the most perfectly timed or perfectly in tune, but look at that smile, look at that enthusiasm and tell me that is not a triumph.”

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.