Monday, 18 May 2015

Never Mind the Politics

Thursday 7th May 2015.

Now that’s a date that many people will remember for a variety of different reasons and yet others will screw their eyes up really tight, count to ten, wish upon a star and hope that it didn’t really happen. However, upon peeping through the cracks between your fingers you realise that yes it really did happen and the Tories have been re-elected.
However, this is no party political blog…..well, not this time.

No, this is about why Thursday 7th May 2015 was a memorable day for Emily. Will she remember the date? No, she’s forgotten it already I’m sure. Will she remember why it’s so memorable for us? No, it was just another day for her.

So why was it a memorable day?

Well, it was the day that Emily got to exercise her democratic right to vote.

Oh that!

Yes, that!

Don’t know why she bothered, what a waste of a vote.

Well, no actually. You see there are very few things which people with a learning disability get to do in absolute equal measure to the rest of us. I must admit I’m half surprised that people with disabilities are allowed a full vote all to themselves and don’t have it watered down somehow. Oh wait, that will probably come in with the various reforms over the next five years….

But actually, when you think about it, there really are not that many things that people with Down’s syndrome and other learning disabilities get to do with the same measure as anyone else. There is so much made of equal rights etc. but in reality we play at equal rights much of the time.

Yes, of course you can have an education (we just reserve the right to only give you the support we think you need and not the support you actually need).

Yes, of course you can have free health care (as long as we are in control of what we deem to be in your best interests, taking into account cost of treatment and perception of how it might benefit you and society as a whole).

Yes, of course you can get a job (but we won’t make it easy for you and we’ll make sure that you lose any benefits you might have been entitled to so you will be no better off).

Yes, of course you can vote.

Yes, of course you can vote. What? Where’s the catch? Where’s the hidden agenda with a whisper behind the back of your hand?

Well actually yes, people with learning disabilities can vote. So we thought why the heck not! So we downloaded the simplified manifestos from the Mencap website and told Emily what we were going to do.

Now when I say simplified manifestos, they were still too detailed to hold Emily’s interest (or mine) for more than a few minutes, so we played headlines. We looked at the headlines for Labour, Conservative, Lib Dems and UKIP. Yes I know, but UKIP have a very strong presence in Rotherham due to the very badly managed Labour dominated council making a right old mess of things, giving UKIP more than a foothold on the council. The lunatics have taken over the asylum. Hard to tell. The lunatics were always there in my opinion. Thank God for our fab local Labour MP’s especially Sarah Champion. Champion by name. Champion by nature. No, it’s not a political blog post….

Anyway, thank the Lord….I mean, anyway, Emily, in her infinite wisdom got rid of the Lib Dems and UKIP straight away. For Emily the hot topic was the NHS and, particularly, care for those with cancer.

(She is THE most compassionate soul on the planet in my opinion.)

So it was red or blue. Labour vs. The Tories. Which would she choose? (Oh, and before you say anything The Green Party were not contending in our constituency. The English Democrats were but even the looneys think that they’re a bit too far off the scale!

She chose. And off we went to Emily’s old primary school to cast our votes.

I must confess I went expecting a fight when we got there. I expected someone to say Emily couldn’t vote or she’d need some help or something else ridiculous. I went first, got my voting form and waited for Emily who handed in her polling card, confirmed her name and was given her voting form. I went in one booth, Emily in another. She took her time and I just finished mine in time to see Emily carefully put her X in the box she said she was going to vote for (we practiced that bit at home). And then she went over and posted it in the box just like it was a letter going to Santa when she was seven.

And there it is. A vote cast in the General Election on Thursday 7th May 2015 by Emily on exactly the same terms as anyone else voting. Result! Never mind the politics!

Sorry? Who did she vote for?

I told you….this is not a party political blog post!

Emily, on her way in at the Polling Station

The vote is cast

Sunday, 3 May 2015

The Best of Times

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us.”

A Tale of Two Cities by Charles Dickens.

Looking back over the past 25 years, this could be how I would sum up being a parent, with seasons of joy and hope mixed with seasons of challenge and despair. I’m not just talking from the perspective of having a child, however old that child may be, with special needs, but let me tell you dear reader, that being a parent is hard work, no matter how many chromosomes your child may have, no matter how well they communicate, no matter what their academic capacity or the value attributed to them by others.

With each of my children I can point to some time in their life and say it was the best of times. These are times when you can climb any mountain, you walk on air, you smell the sweet scent of every flower you brush past on your walk to school without having to bend down. Life just has an indescribable aroma of joy which lifts you, warms you, hugs you and enables you to overcome anything at all that gets in your way. We had everything before us.

But then there are the worst of times. Dark seasons of the soul. Disappointment. Discouragement. Challenge after challenge and every time you think you’ve negotiated your way along this rocky path, you stumble or you’re tripped or the path just seems to disappear in front of you and your feet slip as the scree gives way leaving you clinging to a rocky outcrop on a cliff edge. We had nothing before us.

When you have a child with special needs it can often seem like the best of times and the worst of times all at the same time. We’ve recently had Emily’s annual review at college. If you read my previous post you’ll have gleaned a small amount of the frustration that I feel about that. There will need to be more work done by college, by us and by Emily to find appropriate solutions to some of the challenges here. Spilling my frustration over these pages will do nothing to change the situation and saves you from having to mop up after me. Suffice to say, it feels like the worst of times.

Then on Thursday evening Emily was invited to take part in S-Factor by the special school she used to attend. S-Factor is a talent show for the school’s pupils. Every year it has me laughing, crying, applauding; it really is the best show you could ever see. This year is the 10th anniversary so the school held a reunion concert for former pupils, a fantastic idea and so inclusive of the staff, who consider former pupils still as their own.

When I arrived in the hall to take my seat I saw so many of Emily’s friends. I went across to say hi and got hugs, high fives, handshakes, fist bumps, it was brilliant. There were 27 acts all eagerly anticipating their moment on stage, their time in the spotlight, their chance to shine.

When you’re going through a difficult time or you’ve had a rubbish day at work; when you’re feeling a little bit sorry for yourself and inclined towards inviting yourself to a one-person pity party there is nothing better than going to an event like this. These young people all have learning disabilities of some sort but have a zest for life which is immeasurable. They have a way of encouraging one another which is entirely natural, not forced, not said in the hope of getting a compliment in return but just being nice to one another. It really is most humbling.

Nat, a young man with Down’s syndrome, took his turn to recreate a magical performance from a few years ago. He played the drums, with no accompaniment and was absolutely fantastic. The joy on his face was tangible. He played a drum solo like you’ve never seen and got a huge ovation.

Andy, dressed in a wonderful red and white striped blazer and matching boater, had us mesmerised with Supercalifragilisticexpialidocious from Mary Poppins, remembering every word with perfect timing.

Simon *swallows hard to remove lump from throat* Simon sang Sting’s  Fields of Gold. I watched through tears, in the same way I am typing now, as Simon serenaded the audience with this beautiful song, his broad smile never leaving his face from the first note til last. I will never forget that performance.

There was a group who were their own version of the Ting Tings, singing That’s not my Name. With Stephen, now aged 25 and pushing seven feet tall, on lead vocals, they were all dressed in psychedelic outfits which were as colourful as their personalities. They had the audience clapping and laughing, especially at the end of the song as Stephen sang out repeatedly That’s Not My Name he turned around, bent over and stitched onto his bright pink shorts were the words “My Name is Stephen” – just wonderful comedy.

The evening finished with everyone in tears again as Laura sang I dreamed a Dream from Les Miserables. This was followed by everyone invited on stage to sing Proud – the school theme song. Rapturous applause followed.


Oh yes, Emily. What can I say? Emily loves performing. She is completely at home on a stage and so we are looking at how we can incorporate this into her future life. 

Versatile as ever she went from being a raucous, brash, punk rocking, hip thrusting Pink singing So What! to a demure, pretty dress wearing Christina Perri singing A Thousand Years. She makes me so proud.

So when it feels like the worst of times it can also feel like the best of times. I wouldn’t have missed this evening for anything. I actually feel sorry for those who never get chance to attend anything like this - it really does put life into perspective. The age of incredulity blinds so many to the rich depth, joy, colour and beauty that people with learning disabilities bring to our selfish world.