My brother Philip

December 2013

By Susie Thomas

 

Not many people start a conversation when trying to chat up a young lady with, "Hello sweetheart, what washing machine 'ave you got?" and most people aren't brave enough to shout to a screaming infant, "Shut up, you stupid baby!" and get away with it. But then again, not everyone's my brother.

 My brother Philip

He's different you see.

Philip is 32 years old and was born with a rare genetic condition called Williams Syndrome (WS). WS occurs in about 1 in 10,000 births and is caused by an abnormality in chromosomes. It affects each person differently but is characterised by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive 'elfin' facial features and heart and cardiovascular problems.

People with WS typically have difficulty with tasks such as numbers, writing and drawing, which make daily tasks you and I take for granted, a challenge, but they tend to do well at tasks that involve spoken language, music and learning by repetition. Philip is the happiest, friendliest and most endearing person you could ever meet. He's incredibly sociable, almost unnervingly so, and he approaches strangers with the openness that most people reserve for close friends. On meeting people, it's usually, "Alright mate/ sweetheart*, I know you, how you doing?" (*delete as appropriate), to which they glaze over as they quickly scan their brain to figure out who this stranger is standing before them!

But interestingly, Philip doesn't accept that he's disabled or has a learning disability and he certainly doesn't like being referred to as 'handicapped'. Instead, he prefers to say that he's "different" and "syndrome people have special talents."

Philip may not be able to put his shoes on the right feet, he may go out with his jumper on back to front and inside out, and he may think that 9+1=26, but he is one of the smartest people I know and has many other talents. After all, how many people do you know who can play tune after tune on the keyboard by ear or watch a David Attenborough TV programme once and be able to recite it word for word?! So yes, I agree with Philip, he does have some 'special talents'!

Many WS people have "favourite" topics and fascinations that they want to talk about more often that is socially appropriate. My earliest memory of Philip's fascinations was the fridge. Anytime anyone opened the fridge, he would stand guarding it and as it was about to close, he would bash the door with his palm and shout, "That's what we will have" and only then would he allow the fridge to close! It would drive us all absolutely batty but he had to do it and there was no way of telling him not to!

Thankfully, he no longer obsesses over the fridge however, this has been replaced with 'zooming' through Coventry city centre pretending he's a motorbike (complete with revving sound effects and almost knocking over little old ladies), walking in the tranquil countryside pretending he's a cow and imitating a security guard (always interesting when going through airport security) - to name just a few. One of Philip's fascinations which has never gone away is washing machines, he is never happier than when he's sat watching the smalls circulate in the washer!

This might seem a bit strange to you, but Philip is different.

Most people Philip's age don't keep their hands over their ears because the noise level in everyday situations is too intense for them. Most 32-year-olds don't burst into tears at the sight of something that makes a noise they don't like. Most people his age don't go around giving hugs and kisses to everyone they see.

But he is Philip. And he is different.

Prejudice towards disabled people does thankfully seem to be less ingrained in people's minds these days. However, there are, still people who will still discriminate towards those with a disability (or 'special talents' as Philip would say) for no other reason that they don't understand disability and struggle to comprehend that the world is full of many different people. Some people will be targeted on the sole basis that they are in a wheelchair, some because the people have learning difficulties and some because they look different. It is astonishing to think that this goes on, but it does, and it is up to communities to show this will not be tolerated by creating a completely inclusive society. 

And that's exactly what Grapevine's 'Fruitful Appeal' is all about.

Grapevine, is a charity we've supported during M.a.D 2013 (Making a Difference 2013 is our year of fundraising) and helps people across Coventry and Warwickshire, like Philip, with learning disabilities to get the life they want. Grapevine helps people to use their skills and talents and find places where their contribution is needed to help them build real independence and protect them against isolation and other people's indifference.

Following the EU Skills' fundraising contributions this year for Grapevine, a few weeks ago Helen Reed and I were kindly invited to attend the launch of Grapevine's new appeal at the Herbert Art Gallery in Coventry.

Label_jarsThe Fruitful Appeal, which carries the logo 'label jars, not people' brings with it some important messages to raise awareness of the barriers that people with learning disabilities face, and boost fundraising to support the vital work that Grapevine carries out.

Over the last two years, as a company, EU Skills, with the help of staff has raised a whopping £16,889 for a variety of good causes including Grapevine and this year, we've donated an incredible 1,070 hoursof our time to supporting charities - absolutely phenomenal for an organisation of just 90 people! The launch of Grapevine's appeal enabled Helen and I to see first-hand, the incredible difference our fundraising and support makes to people's everyday lives, as well as a small charity like Grapevine.

In 2014, for the third year running, we will be holding another year of fundraising and we will once again be asking our staff to nominate charities which they feel we should support throughout the year. We are really excited about our fundraising plans and we can't wait to raise even more money for worthy causes to make a difference in 2014.

Susie 

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