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


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!