Monday, 27 October 2014

The Pathway of Perspective

What do you think of when you hear the words Down’s syndrome? Be honest. What’s the first thing that pops into your head? Whatever it is, that’s likely to be your dominant thought about Down’s syndrome. And that’s fine. Our thoughts, our views, our perspective depends upon our positioning and our experience.

Four people can be on the same mountain but all see different things: one is at the top looking down, one is near the bottom looking up, one is by the cliff edge feeling scared, one is in the forest trying to find the right path; all standing on and looking at the same mountain, but all with different experiences.

It’s likely that the next time any of those people think of a mountain trip, they’ll remember their past experience and what they saw and felt then. But there are many mountains, many paths and many different views.

It can be like that with Down’s syndrome, or any disability for that matter. Just imagine, as a parent, you get all the support you need, a great husband / wife, midwife, paediatrician, Portage worker, speech and language therapist, occupational therapist, teaching assistant, teacher, headteacher, social worker, college principal, doctor, careers adviser, employer, neighbour, bus driver, family member……

They’re all great. Your path might look quite straightforward, you might soon be dancing on the top of the mountain. Looking at the view. Breathing in the air. Having a picnic.

But…….

Imagine the path for the person who has a difficult time with any one of that group of people.

Or maybe two of those people….

Or three….

Or four…five…six…

Maybe they’re having a tough time with most of those people…

Their path is not so easy. They can’t even see up the mountain for all the times they’re up at the cliff face, sliding back down with every effort to move forward.

That can be lonely…

That can be difficult…

That can be just too much and so they give up…

So let’s all remember there are many mountains. Many paths. Many experiences. Many perspectives.

If you are going through a tough time, if you’re on a path seemingly going nowhere, if you can’t see what’s round the next corner or beyond the next plateau, if the fog has closed in, it doesn’t mean that there is not a beautiful view, it just means you haven’t seen it yet. Just because you can’t see it doesn’t mean it is not there. Allow others to guide you. Don’t try to navigate this path, this climb, on your own.

Equally, let’s not stand and watch as others need a helping hand or a guiding light. Let us be there to help one another through the difficult times, for they come to us all at some time or another.

But equally, let us not deny the stunning, beautiful view that exists when we climb higher. Let us not deny others the opportunity to have their eyes opened and their lives enriched beyond measure.

The climb may be tough but my eyes have seen colours I never knew existed. My feet have danced to tunes not heard before, my ears have heard singing that angels could only wish to echo.


What’s your perspective? 



Monday, 1 September 2014

The Battle of the Bulge


It might just be me, but in my experience you don’t get to be 47 without…. no wait, I’m 46….(what chance have I got when I can’t even remember my own age)…I’ll try that again – in my experience you don’t get to be 46 without a little middle age spread. Perhaps just a bit too much where there used to be just about enough. Or am I the only one fighting the battle of the bulge?

No, no, no I’m not talking about being overweight! Heavens – I have the figure of a racing snake! No, I’m talking about the spread that occurs when we accumulate stuff in our homes. When the spaces which were once joyously, well spaces, have been overtaken and overwhelmed by 20+ years of books and clothes and toys and games and ornaments and books and clothes and toys and games (did I say that already?)…..

As if it’s not bad enough in our living space, try finding something you want from the garage, and I’m not talking about the car – who on earth puts their car in a garage for goodness sake? How could I when the garage is full of books and clothes and toys and games and lawn mowers and hedge trimmers and half used paint pots and bits of wood that I just know will come in handy one day (come on you men I know THAT is not just me)…..

As for the loft, it’s a wonder everything up there hasn’t come tumbling through the ceiling from the weight of books and clothes and toys and games and Christmas decorations and photo albums and suitcases and Abba LP’s (everybody’s got one somewhere).

So leaving Emily tucked up in bed under the watchful eye of her married big sister (also tucked up in bed) we squeezed the contents of the house into the car and, although I’d have preferred the charity shop or perhaps the recycling facility (or “tip” as we call it up north), we headed for the CAR BOOT SALE.

This for me is about as much fun as toothache. But today we were going to a different one – “we’ve not been here before” I’m told. Joy. (Toothache with anew dentist is still toothache right?) No sooner had we parked up than we were ambushed by a headache (collective term) of bargain hunters. They were in the boot of the car quicker than I could say “no I’ve got no jewellery”. Eventually when they heard that they all disappeared like an early autumn mist – leaving me, Sheron and a toothless Eastern European lady who seemed intent on buying a pair of curtains for 30p.

There has to be better ways of spending a Saturday morning doesn’t there? I think of feigning injury and sitting out the rest of the morning alongside the other men who were there under protest, but my interest in selling our stuff is stirred when I see that people are actually queuing up to buy. I mean, what is wrong with these people? Seriously those miniature Lilliput Lane houses are going to be in their loft before Christmas. Never mind, that’s another few quid. This is getting interesting. And some of them actually speak English. Sheron strikes up conversation, “Morning” she says to a man in his 60’s “how are you today?” she enquired. “Do I know you” the man barked back. “No, just being friendly” Sheron replied. “Oh” says the chap scratching his head, “that’s nice….makes a change”. He stops to engage further in humorous northern banter as I wrestle a $40 New York Yankees cap from the hands of another new friend who insisted on paying no more than £2. I hold out for £3. He walks off but comes back half an hour later with the extra pound. I’m feeling so smug I consider giving that small child the ball he’s looking at for nothing. But Sheron’s there first and clenches proudly the 10p she managed to get for it. We’re on fire.

At the end of the morning we’ve made far more than we could have expected, despite the opening starting bids of 20p from most of the punters. I see a burger van selling cheeseburgers for £2.50 and wonder if they get the same opening bids. “20p…30p if you throw in a hot dog as well!” Perhaps not.

The best thing about days like this is not what we made. It’s not even piling up years of stuff on to a broken pasting table and watching people descend on it and devour the goods like drunks on a Friday night kebab. No, the best thing is getting out there, meeting people, talking to people, they’re actually quite interesting. It made me realise I’m nowhere near as good at this as Emily is. She has a natural ability to communicate. As soon as she understands the context and that it’s like a shop, rather than just talking to random strangers, she’s well away in situations like this.

If only we had taken her this time, we’d have probably sold lots more, instead of loading it back into the garage.

 

Sunday, 24 August 2014

All About Emily

The great thing about people in the public eye saying negative things about Down's syndrome is that it gives a great platform for us to help change perceptions by posting positive comments, articles, photo's, etc and this has been done so well by the Down's Syndrome community over the past few days.

It's incredible that this community is almost like a family. We care for another, we support one another, we encourage one another. Yet not only are we are in different parts of the UK, we are in different parts of the world, united by a common desire to make the world a better place for people with Down's syndrome and their families.

One day I'm going to get Emily to do a blog post and let her say what she likes (what is life if you can't take a few risks?) but first I wanted to show how Emily is no different in so many ways to anyone else. How could I do that? Well I thought I'd interview her. Just a series of quick fire questions for her to answer to give a brief insight into her life, her likes and dislikes, her hopes and dreams. So here's what she said. I hope it helps build up a picture of Emily, my beautiful daughter. 

Name: Emily Rosie

Age: 22

Birthday: 12th August

Brothers: Matthew and Mac (brother in law)

Sisters:  Laura & Kerry (sister in law)

Home town: Bramley

Education: Hilltop & Rotherham College

Qualifications: GCSE – cooking, drama & PE

Work experience: Previously been a retail assistant at Mothercare and Spar. I'm going to be working in the office at a local special school and have just agreed to be a specialist disability consultant for YMCA

Boyfriend: Jono (5 years)

Food heaven: Quiche & chips

Food hell: Parsnips

Favourite band or singer: The Saturdays

Favourite hobbies: Swimming, reading, listening to music

TV heaven: Embarrassing bodies, Waterloo Road, One Born Every Minute

TV hell: Family guy

Favourite film: Mean girls, High school musical, Sleepless in Seattle

Favourite holiday destination: Cornwall

Where in the world would you like to visit: Australia

If you could choose 4 people to invite to a party who would they be (alive, dead or fictional)? Mel C, Katy Perry, Princess Fiona from Shrek, Will Schuster from Glee

Who / what makes you laugh? Harry Hill’s TV Burp

Who / what makes you cry? Romantic films

Ambitions: Be in a newspaper, ride a pony, get married, live in my own house, have a job working in the kitchens and do health and safety


Tell us something funny about your family I like to get my Dad to pretend to be a pussy cat and do meowing and purring


Wednesday, 20 August 2014

The Ability Delusion


If his name is unfamiliar to you, Richard Dawkins is a scientist and writer.  Amongst other works, he is well known for his book the God Delusion where he attempts to disprove the existence of a supernatural creator or God. Science usually demands evidence to support a theory and to my knowledge no evidence has ever been presented to prove that God does not exist. Indeed it is impossible to do so as faith and science are uneasy bed-fellows.

However, I’m not writing this blog to re-ignite that particular debate. I’m just teasing out a picture of how unscientific our scientist actually is.

No, today Richard Dawkins has told his one million or so twitter followers that it “would be immoral” to bring a baby with Down’s syndrome into the world if you have the choice.

When asked whether it was civilised that 994 human beings with Down’s syndrome are killed before birth in England and Wales every year, Dawkins replied “Yes, it is very civilised. These are foetuses, diagnosed before they have human feelings.”

Another person then wrote “I honestly don’t know what I would do if I were pregnant with a kid with Down syndrome”

Dawkins: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

The when Dawkins was quizzed on autism he replied “People on that spectrum have a great deal to contribute, maybe even an enhanced ability in some respects. DS not advanced.”

Excuse me a minute (bangs head on desk several times)

No, it’s still there. Apparently it’s true.

Who DOES this man think he is? He doesn’t believe in a superior creator or God, yet he believes that HE is the one who can tell the rest of us what is civilised and what is moral!!!! On what basis?

The damage his comments could do, or already have done, is incalculable.

Under current legislation it is legal to terminate a pregnancy after 24 weeks “if there is substantial risk that the child would be born with serious physical or mental disabilities” – this includes babies with Down’s syndrome.

Life is considered viable after 24 weeks, at which point, it would be wrong to state that it is a fetus without human feelings. In fact it seems that Mr Dawkins is the one without human feelings, so should a similar approach to be taken for any adult without human feelings? #JustAsking

As for the question of autism versus Down’s syndrome, Mr Dawkins has really shown his ignorance of the subject. There are many people who have a dual diagnosis of Down’s syndrome AND autism. In fact, it is likely that there are a great many more without a formal dual diagnosis who have both characteristics.  Dawkins suggests that people with Down’s syndrome have nothing to contribute.

Is he suggesting that MY daughter has contributed nothing for the past 22 years?

Is he suggesting that she has no enhanced abilities?

How can he do so, he has NEVER met her (Yes Mr Dawkins you have made this VERY personal).

I do not feel I need to defend Emily or anyone else with Down’s syndrome. The way they live their lives is defence enough. Unfortunately Richard Dawkins and people who hold similar views, usually speak out of ignorance and intolerance. If he were speaking about people of a particular race, religion, ethnicity, gender, etc his words would be considered a hate crime but, hey it’s ok to talk about people with “disabilities” like that.

I have a theory. I have no science to prove it so I reckon that puts us on the same playing field Mr Dawkins. But here goes….

·         Drug dealers are never people with Down’s syndrome

·         Alcoholics are never people with Down’s syndrome

·         Wife beaters are never people with Down’s syndrome

·         Bank robbers, crooks, fraudsters – Down’s syndrome? NO

·         Murderers, rapists, muggers – Down’s syndrome? NO

·         Paedophiles – Down’s syndrome? NO

·         Liars & cheats – Down’s syndrome? NO

·         Rioters, arsonists and terrorists are never people with Down’s syndrome

JUST WHO IS SUPPOSED TO HAVE THE DISABILITY HERE?

The Ability Delusion has sold us a lie where we have come to accept that the things listed above are “normal” and that the way that people with Down’s syndrome live is something which deserves eradication of all human species with trisomy 21.
 
Now those of us in the know are more than aware that people with Down's syndrome are not angels. They can have tears and tantrums, they can fart and swear just like anyone else. But they bring something out of those of us who get to know them, qualities which we didn't even know we possessed. My development as a human has been enhanced by the presence in my life of Emily and many other people I have met with Down's syndrome. So if evolution really is about the survival of the fittest and the development of the human species we need to have an outlet for those very qualities which make us truly human - patience, compassion, grace, acceptance and love.

So Mr Dawkins, come and talk to me; come and talk to my daughter. Accompany her on a night out with her boyfriend. See what she’s doing in college. Take a look through my photo’s of the past 22 years. Sit in her bedroom and tell me that she does not deserve to live. The least you can do is read Emily’s Room.

If there’s something uncivilised here; if there’s something immoral and without human feeling; if there’s a lack of contribution then it’s all coming from your side of the fence.

And may the God you deny forgive you.
 

 

Monday, 18 August 2014

A Different World

“Aren’t these things marvellous!” exclaimed 94 year old Uncle Walter as I showed him photographs of the children on an iPad, “It’s a different world!”


It’s a different world.

I paused to think on that. How the world has changed even in my lifetime and I’m only half Uncle Walter’s age. Don’t you think it’s amazing how quickly things change? There are things which have always been, which we take for granted, and then in a heartbeat they are gone; consigned to the pages of dusty history books and historical society photograph exhibitions.

If, like me, you happened to live in, or visit, South Yorkshire before the mid 1980’s you will remember the iconic pit head winding wheels which stood proudly in virtually every village in the area. They were symbolic of the people who lived in those villages, the working class Yorkshire folk – proud, gritty, parochial, hard-working and generous to anyone who was prepared to put in the time and effort.

The rumble of coal wagons and the steel hammer of a distant foundry provided the soundtrack to my night-time as I lay in bed as a boy; an industrial lullaby as comforting as the tap tap tapping of sleet at the window on a cold winter’s night when you’re all tucked up under a lovely warm duvet after a mug of hot chocolate. Cosy. Sleepy. Lullaby.

Now the collieries are all closed, the coal wagons are redundant and the winding wheels are only seen amongst the flower beds as you enter a village; a tombstone, a memorial to days gone by; a reminder that time stands still for none of us, things change whether we like it or not.

(Yes it is a bit melancholic isn’t it? Stick with me, it may get better....)

I took a walk with Emily recently on a beautiful nature reserve. We never made it as far as the lake where swans were protecting their young, but it was just great to be out breathing the fresh air as the evening sun set the clouds on fire in the western sky. This is the place I feel closest to my dad, who died back in 1987 when I was still a teenager. This nature reserve was where he worked. I met him here many times as a child and I still do today. As I bent down amongst the tall grass I pulled from the ground a shiny black rock; a reminder of why he came here. Coal. My dad worked at the colliery on this very spot. This is where he met the Queen! When I came here as a boy it looked so different. The red brick buildings, the dirt, the grime, the noise, the lorries, the railway, the miners – now all gone, silent, replaced by grasses, thistles, wild flowers, hares, skylarks, peace, stillness and the ghosts of my memories.

It’s a different world.            

What will our world look like when our children are older I wonder? It’s a sobering thought that the things we take for granted now may be consigned to the digital version of a dusty history book (an archived web page doesn’t sound half as romantic does it?) But it has made me realise once again that life goes on, change happens, people come and people go but we leave a legacy that lives on in our children and for our children. I want to make sure that what I leave is worth leaving. I want to ensure that change has happened because I could be bothered to make positive change happen rather than leaving people to complain about the effects of negative change, when I could have done something about it. I want to help ensure that people with Down’s syndrome, those already alive and those still to come, have better access to services they need. I want to help ensure they have a fairer education where their needs are not just met but where they have the support that will enable them to thrive and flourish. I want to help change the perception of Down’s syndrome so that health professionals and expectant parents see termination as a last resort rather than a default setting.

Now that would be a different world!
 
 
 
 


Dad
 
 

Monday, 30 June 2014

Who knows where the time goes?

I'm not sure quite where to start, it's been such a long time. So much has happened and is still happening but I thought I'd better at least let all you lovely people know we're still here, not dropped off the planet, just busy with all sorts of stuff, as I know many of you are too, so thanks for taking the time to give this a quick shufti (it's a real word - I looked it up and everything!).

Oh for the life that the Righteous Brothers sang of in Unchained Melody "...and time goes by so slowly..." Yeah! Right! (vinyl record scratches to a stop) ......And before you start asking who the heck are the Righteous Brothers when everyone knows it was done by Robson & Jerome, just look it up on Google - it's been done by everyone from Elvis to Jimmy Young, Barry Manilow to U2!

Anyway I digress.

Time does NOT go by so slowly, it goes by so flippin' quickly I can't believe Emily is nearly 22 (as she reminds us daily), so enjoy the moments pop-pickers, enjoy every day and cherish the memories. "Who knows where the time goes" by Eva Cassidy (and others but let's not start that again) is more like the tune playing in my head on a regular basis.

So what have we been doing? Lot's actually. Things we've been up to but not told you about yet include:
  • Emily and me being on BBC Radio Sheffield with Andy Crane (if you're young enough you'll remember him from the broom cupboard with Ed the Duck)
  • Emily being bridesmaid at her big sister's wedding in America!
  • Emily discovering that she's going to be an auntie (she's excited about that one)
  • Emily starting independent travel training
  • Emily doing a voluntary work placement in a charity shop
  • Emily passing her Stage 4 Musical Theatre exam
  • Emily getting to the end of her 3rd year at college
I hope that as Emily and I come to tell her story a bit more, you are encouraged by what you hear. I appreciate that there are a lot of people who read these words whose children are much younger than Emily. I want to let you know that there is a world of possibility out there if only we are prepared to help the rest of society understand and lift the limits.

The other thing we all need to remember is that different schools, colleges, clubs, societies, etc are only as good as the leaders who lead them. It's not even about one part of the country being better than another - it all comes down to people. So I say let's influence the influencers. Go to the top, head for those in positions of authority because everything rises and falls on leadership.

Anyway, enough of this for now. I will get round to telling you more about some of these things above over the next few months. The wedding was a particularly memorable event and Emily gave a superb speech as sister of the bride (look she's always been a pioneer and a trailblazer so if she wants to give a speech who in their right mind is going to try and stop her!). I'll let you know about that one soon. In the meantime here's a picture of Emily with her sister Laura and new (American) brother-in-law Mac.

Bye for now,
Paul




Friday, 21 March 2014

Thank you

Today is World Down Syndrome Day. People all over the world are celebrating the unique character and personality of people with Down's syndrome. We're celebrating the colour they bring to all our lives. I'd love to put together a really clever tome to inspire and encourage everyone. But I simply want to say Thank You. 

Thank you to everyone who has been blogging, tweeting, posting, youtubing, emailing and generally all things ending with ...ing, the world over, for raising the profile of people with Down's syndrome and helping to challenge outdated thinking and perceptions.

Thank you to the organisations, charities, support groups who do so much to support people with Down's syndrome, their parents and carers, friends and family.

Thank you to the forward thinking media planners and producers who give air time, column inches and a voice to people with Down's syndrome across many media channels.

Thank you to health care professionals who do so much to care for people with Down's syndrome when they need it most.

Thank you to teachers, teaching assistants and all people connected with education who make education a possibility and a reality through creative planning and inspirational teaching.

But most of all, thank you all those beautiful people who have Chromosome 21 in triplicate - our friends with Down's syndrome. Quite frankly I am a far richer person for knowing you. You bring light, life and colour into the world. You make me see things in a completely different way.

You make me slow down. Stop. Look. Breathe.

You challenge me. You challenge my thinking. You challenge my hopes and my fears. You challenge my prejudice. You challenge my patience. You challenge my learning and my desire to learn more. You inspire me. You bring out from within me something that would otherwise have remained buried deep down; compassion. You help me realise that the most important person in the world is NOT me.

Thank you!!