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