Children in Need

Children in Need day is almost upon us once more.  The BBC do a wonderful job of raising lots of money for “disadvantaged children” by inviting support from the public. It’s a positive, worthy cause.

So why does it make me feel so uncomfortable?

Much of the money raised goes toward supporting children with disabilities.  Children like Scarlett.  The money is used to provide equipment, services and support for families.  And of course I’m delighted that help is available.  We haven’t needed to access support from a charity yet, but I’m glad to know that safety net is there if we ever do.  I’m glad to know there are so many kind hearted people willing to make a donation.

So why does it make me feel so uncomfortable?

As an activist and campaigner I often feel at war with public perception.  I work hard to dispel so many of the myths and misconceptions that surround individuals with Down syndrome.  I push back hard at a medical profession who often present a diagnosis of Down syndrome as the worst possible outcome.  I strive for families to be provided with balanced up to date information instead of being pushed toward a termination.

As a mother I cringe at the thought that anyone may look at my family and feel pity.  That they may look at my daughter and think “what a shame”.    I rarely share the tough days with anyone outside my trusted inner circle because I fear they might think it might have been better if she wasn’t here.  Having kids is bloody hard work, with or without Down syndrome.  But while most mums get to have a moan about how tough it all is, I feel compelled to stay silent.

So why does Children in Need day make me feel so uncomfortable?

It’s very simple.  To get the donations you have to tell a few sob stories.  The British public won’t part with their hard earned cash for nothing.  In return they expect an evenings entertainment. They want to sit on their sofa with a cuppa in hand feeling sorry for all the poor disadvantaged children.  They want moving background music and some inspirational stories.  They want to feel good about themselves for picking up the phone and making that donation.  They want to feel lucky it’s someone else and not them.

Next week Children in Need will put us back a step.  It will put firmly into the publics mind that children with disabilities are “disadvantaged” and rely on support from charities.  They will use the faces of children with Down syndrome to promote the cause and they will further the fear that many feel about the condition.

So I ask this.  Make a donation.  This is a good cause and an over stretched NHS and welfare service means that more and more families are relying on charities.

So make a donation, as much as you can afford.  But do it with love and not pity.  Do it knowing these families, families like mine love their children just as much as you love yours.  Do it knowing that I wouldn’t change my girl for the world.