Kristian is the close friend of a friend, a hardworking single Dad, a gaming expert, a cheeky comedian and the nephew of a man who has Down's Syndrome.
Please read his heartfelt words about his Uncle Martin who is nearly 50, and how times have changed for those with the condition. But have we got our priorities wrong?
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| Uncle Martin |
My Uncle Martin is
approaching his 50th Birthday. He was my grandparents second child,
following a gap of almost 10 years after his sister (my mother). They had
already started their family later than many at the time following my
Grandfather’s enlistment in the Army during WWII. There were no controversial
screening programmes back then so they didn’t know he had Downs Syndrome until
he was born.
I don’t know exactly when
it was that I became aware that my Uncle had Downs. As a child yes labels do exist, but until
you understand them they aren’t how you define something or someone. To me he
was always just Uncle Martin. The one who would sit with me for hours watching
The Dukes Of Hazzard and Knight Rider, amongst others, and get the same excitement
from them as I did. Always picking me up for hugs joining in with whatever game
I’d decided to play.
He has not achieved what many would consider great
things in his life. He has no qualifications. Has never been the face of a
brand or broken down barriers. Has never had a job and he has never lived
independently. Aspirations I’m sure many of you reading this will have for your
child. Sadly they won’t all achieve them. But does this mean their life will be
unfulfilling? That they will not be happy and content? Ask Martin.
He was born in the mid
60’s. A very different time for people with disabilities. Most of his education
came from my grandparents at home. He attended little if any mainstream school.
Certainly nothing beyond Primary level. His interaction with other children
beyond the neighbours was done at groups and centres where all the other
children were similarly disabled or were siblings of children with a disability.
Into adulthood he attended day centres which were not just about respite for
my grandparents. Working alongside other people with disabilities he would
normally attend Monday thru Friday, transported to and from the building by
mini-bus. From what I understand it was almost like a normal work environment. They
would produce jigsaws and similar products that were sold to help raise funds
for other activities. Sadly over the
years, government funding for things like this has all but evaporated. He still
attends a much more limited version to this day, although it is now only two part
days per week.
In late 1988 my
Grandfather, who had been providing sole care for Martin since the death of my
Grandmother only a couple of years earlier, died suddenly. For a while his
older brother who lived close by took Martin in. However as a man of nearly 70
in deteriorating health himself, this could never be a long term solution. My
mum was in no position to take him into our home as a single parent with two
children under ten. Much as I could see, even then, that the alternatives were
limited and not very appealing to her as his sister.
Thankfully, through a
friend’s recommendation, she found a place at a very, very special residential
home. It was family run and catered for people with a variety of mental
disabilities. He would have his own room and be encouraged to live as
independently as he wanted to. Residents were offered the opportunity to take
part in the preparation of all of the meals that would be eaten together. In
the grounds of the house the owners kept chickens and grew vegetables, which
again were activities that everyone could be involved in.
He has lived there now for
24 years, many friends have come, and sadly gone in that time. It very much
feels like a family when you visit as familiar faces greet you and ask how you
are. He has been very lucky to find such a warm, family orientated environment.
Whenever I see him he always has something to tell me about what he’s been
doing or what he’s looking forward to doing. He takes great pride in taking
part in community events where the home opens it’s doors to the public to sell
excess fruit and veg grown in the ever expanding corner of the garden dedicated
to that activity.
Even now his sight is weakening and his legs give him all
sorts of discomfort there is always a smile on his face and a practical joke to
be played. He doesn’t like it that I’m now the one who picks him up for hugs
though...
I’m sure that many of you
who read this will be horrified by the thought of your child ending up in a
residential home. That there is no way that is something you could/would ever
contemplate. My grandparents would certainly have been too. But for me, the years
he has lived there have been the happiest and most inclusive of his life. He
operates more independently now that I ever believe he would have had he
continued to live with family. He comes out every Saturday and spends the day
with my mum and now my son, who my mum provides childcare for while I work. I’m
proud to say that he, like me, doesn’t see the label. He knows Martin as the
one who watches Doctor Who and Transformers with the same excitement as he
does. I supposed in that sense Martin has achieved barrier breaking. My son
will be more understanding of disabilities as a result of their time together.
So, back to my point. The
reality is that despite all the wonderful, positive changes today in how
it is handled, not every child born with Downs will achieve everything their
parents aspire for them. Certainly I feel that including people born with the
condition in mainstream education with support and encouraging them to play
whatever part in society they want to is the right thing to do. Who knows what
a difference having that opportunity would have made to Martin’s life. But do I
think that not having those chances has made his life any less fulfilling and, for want of a better word, ‘happy’? No I do not.
And for me, that last part
is the most important. Surely that is everyone’s dream? To be happy. Not just those that are
not as able as the majority.
Kristian
