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.

Listen...

Shhhh...

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.

Saturday, 21 May 2016

I love nature

Today I have a very special guest post from none other than Emily herself! 

We were out walking at a local country park this afternoon and half way round Emily started telling us how much she loves nature. It was brilliant but I had no way of capturing what she was saying. So I asked her to remember this moment and when we got home to write down her thoughts. And she did.

It's by far the best post ever to feature on this blog. It's completely unedited, except for one or two minor spelling corrections. I am as proud as can be. There are no mistakes, scribbles, re-writes, etc in Emily's notebook - these are her thoughts as she thought them.

Let me know what you think. How does it make you feel?




I love nature by Emily Critchlow


I love nature because

I have faith in myself

Joy

Love

Peace

Happyness

Life

Calm

Quiet

And see the beauty in nature is all about building up my life

And fashion of fresh air and freedom

I see the water glistening around me

And I hear myself laughing

And picture this

I feel blessed

That God offer me wonder and beautiful

For me

To open up at the stars and planets and fill me with smiles

And I am perfect with it

It makes me feel proud again

It feels so much and my dreams come true to be me

And anyway I like rainbows


Thank you Lord xx





Friday, 13 May 2016

Bingo & shelly

Seeing a picture of a friend's son at work with her today reminds me of the day that Emily came to work with me. Emily was just 18 and it was school holidays. It was a Tuesday. I know it was Tuesday because in those days part of my weekly work pattern was to go help at a lunch club for the elderly on one of Sheffield’s most difficult estates.


Emily loves old people – what could possibly go wrong?

Although it’s a lunch club, cooking for 30 people means getting there early to peel and cut dozens of potatoes and carrots, set the tables, get the bingo ready (more important than food here in the north) and have a bit of a chit chat with the other volunteers.

Emily did really well. She’s not a natural with a veg peeler but she got stuck in in any way she could.

As the elderly residents from the estate arrived they were delighted to see a new volunteer in the shape of a young 18 year old. Down’s syndrome was nothing new to them as there was another volunteer with Down’s syndrome, Gwynneth, who loved being there. Her main job was serving the dinners after they’d been plated up. Some people liked a standard portion (known as big) and some had a smaller portion (known as small).

You’ll understand.

First up it was bingo. Now I had the dubious pleasure of being bingo caller this particular morning which meant I couldn’t keep a close eye on Emily. Of course this played strongly into Emily’s hand and she milked it for all it was worth. Sitting with the old dears she marked her bingo card as fast as lightning.

“Yes” she whispered as another number was covered.

“Get in!” as another one fell.

 “Shush”, I tried to catch Emily’s attention as we cranked up to play for the full house.

Emily just looked at me with a twinkle in her eye, knowing I was not close enough to do anything about her game-making.

 “Come on! Who’s the daddy?”, followed by a huge “Yes - THANK YOU JESUS - hooray!!!”

Usually they don’t like any noise between numbers but on this occasion they all thought it was funny. I didn’t. Gwynneth looked across at Emily, not amused. Soon enough it was time for dinner.

Gwynneth was a non-nonsense kind of young woman. She’d emerge from the serving hatch with another dinner. “SMALL!!!” she’s shout at the top of her voice. If there wasn’t a quick enough response she’d shout again with greater fervour.

“SMAAAALLLLL!!!!!”

Emily soon caught on.

“BIG”

“BIG”

“SMAAALLLL!!!!”

Shepherds pie followed by apple crumble was soon consumed and we’d normally have a coffee to finish. Except today was somebody’s birthday and she’s brought a bottle of sherry to celebrate.

I was washing the pots before I’d realised what had happened. They’d poured Emily a large one and down it went in one! “Aaahhhh!” followed by lip smacking and “Gorgeous! I love shelly!” said Emily.

Emily was not used to alcohol. She still isn’t. I wasn’t to know what was to follow.
It was soon time to leave. I decided I’d take Emily on to the office for the afternoon – it had been a fun morning, despite the sherry episode. I sat Emily at an empty desk while I got on with checking emails.

“Hey dad!” said Emily, as she delved into an unlocked draw, pulling out a lanyard with a name badge for Will, the CEO’s PA, who was on annual leave. “Look at me – I’m Will”. Emily put Will’s lanyard round her neck.

“Behave!” I gave her something to read as I sat back down to delete more emails.
There then followed one of those moments. You know, those moments where everything happens in slow motion.

Will’s phone rang. Emily, quick as a flash, leaned across the desk to answer it. 

Simultaneously, I jumped to my feet to dash across the few feet between me and Emily. I wasn’t quick enough. “Hello, good afternoon, Emily speaking”, giggled Emily as I tried to wrestle the phone from her hands. I could hear a voice on the other end as Emily was nodding and saying “Yes. Yes. Mmhmm. Yes.”

“Give it to me”

“No”

Oh flip. I’m going to get sacked. The CEO has some very high profile contacts. This could have been the Archbishop of Canterbury for all I knew!

Eventually I wrestled the phone from Emily, apologised to the caller and managed to smooth things out. I then took Emily off to our work cafe where I was due to meet my boss, who is very laid back and loves fun and good times, so I figured a meeting including Emily would be a good idea, despite her increasingly loud and inappropriate for the workplace behaviour!

It got worse. So I quickly got Emily’s coat and drove half an hour home, went through the door, told Emily’s bewildered mum, “I can’t cope – she’s drunk on sherry and I’m going back to work!”.

Emily just stood there grinning.

“Hmmm. I LOVE shelly!”




Wednesday, 4 May 2016

Informed consent

Congratulations!
So pleased!
When are you due?
Amazing!
Aww lovely!
I knew, I just knew!
A boy or a girl?
Do you mind?
Course you don’t
As long as it’s healthy
Right?
As long as you’re both well


Emotions erratic
And this sickness
Who knew?
Ecstatic one minute
Then tearful
Head stuck down the loo
Nursery
Needs painting
In pastels or bold?
This bump
A true miracle
Can’t wait to hold


Visits
Appointments
Check-ups and tests
Routine
Right?
Doctors know best
A problem?
You’re sorry?
You’re not making sense!
Trisomy?
Down’s syndrome?
YOU'RE NOT MAKING SENSE!!!


Tearful
Fearful
What does it mean?
Genetics
Confusing
Explain what it means!
Why did it happen?
Why me?
Why now?
Chance?
Or my fault?
And what happens now?


Choices
Head spinning
Abort? Try again?
Disabled?
What option?
But to try again?
Wait
Don’t be hasty
Show me the life
Of someone
With Down’s syndrome
Before you take this life


A baby
A toddler
Her eyes are so blue
A gymnast
An artist
Amazing - who knew?
OK, not all plain sailing
Health issues
I see...
Delays with some learning
Help needed
I see...


Mainstream education
College
Friends
Exams
Aspirations
Vocations and plans
Talent
Inspiring
Haidresser? For real?
These photo’s
Professional
This kid's a big deal!


Perhaps life
With Down’s syndrome
Is not quite what they say
Health issues...
Challenges...
But there’s much more to weigh
On the scales
Of life
A decision with intent
Needs balanced
Information
To gain informed consent