Wednesday, 14 March 2012

A pro-life perspective on letting go

Last night I watched Letting Go on BBC1, a documentary by disability campaigner Rosa Monckton telling the stories of several young people with learning difficulties as they make their first steps towards independent living.  If you didn't see it, it's well worth catching on iPlayer.

Rosa's 16 year old daughter Domenica has Down's Syndrome, as did some of the other young people featured.  As far as Domenica is concerned the sky's the limit when it comes to planning for her future - she loves dancing and at the end of the programme was thrilled to secure a place at a stage school which teaches special needs students together with their mainstream peers - but Rosa is only too painfully aware of the harsh realities her daughter is going to come up against as she tries to find her niche in the world.

This theme was repeated amongst the other young people and parents that Rosa talked to.  Like all parents, those we met in this programme wanted to encourage their children to live their dreams and achieve their full potential; like all parents, they knew that the normal course of things required them to let their chicks fly the nest and live their own lives, for their own good.  Unlike the majority of  parents, however, they were painfully aware that theirs wasn't quite the normal course of things and that there would be special challenges to address. One of the young people, a young man with Down's Syndrome, had already come up against some of those challenges. His attempt to live an independent life in his own flat had gone very wrong, despite a lot of support from his parents and carers, because his neighbours insisted on being so cruel to him that they made his life in the flat miserable and ultimately untenable.

As the mother of a disabled teenager, so many of the concerns of Rosa and the other parents struck me to the heart.  The dilemma of encouraging your child to have high goals and hopes for the future yet be realistic about the very real physical limitations that have to be addressed; the fear that others will not understand them, will mock them for being "different" and leave them lonely... and above all, always there, a spectral shadow subtly darkening even the sunniest day, the fear of how they will manage when you are no longer around - as one day you won't be.  The ghost of that fear is a terrible one, always with you, sometimes in the background and sometimes right there in your face gripping you by the throat.

All but one of the young people featured were still living in the parental home.  The one that did have her own home - a 28 year old - was still very dependent on her parents who came round daily to give her care, because as she lacked a formal diagnosis (although she very obviously suffered from a syndrome of learning and physical disabilities) she was not eligible for state funded care of the sort she needed.

It seems that so many people who are carers for relations with mental or physical disabilities end up struggling at some point to get necessary assistance or facilities for them.  It is an extra worry and burden that no-one needs when they are already expending (however willingly and lovingly) a demanding amount of emotional and physical energy on supporting their child.  A particularly demanding aspect of that support lies in encouraging your child to be happy and positive and see their future as worth looking forward to.  The parents of these young people were happy to sacrifice themselves to give their children all the backup they needed, but at the same time were worried sick about the future care and wellbeing of those children once they were no longer in a position to help, and the combined strain showed.

Isn't this - the provision of care and support for the most vulnerable in our society - where we should be concentrating our resources?  These parents were role models of how to convince a disabled person of their worth, but the sad fact is that the wider world out there isn't necessarily like that.  Aborting babies with Down's Syndrome (an absolute travesty: like most Down's sufferers, the youngsters featured in this programme were happy and adorable) and promoting euthanasia as the answer to life's difficulties are neither good uses of time and money, or the right ways to encourage the inclusivity and equality that we like to pride ourselves on these days.  In fact inclusivity and equality are going to become progressively emptier terms the more we deny life to those who aren't "normal" or "perfect", because our actions simply encourage the attitudes which the young man tormented by his neighbours came across.  If we really celebrate diversity, if we really believe that no-one should be shunned or teased for being "different", then let's embrace all life and every person and concentrate on giving them reasons to live, not die.

I'm afraid I can't remember the exact words she used, but at the end of the programme Rosa commented that if a society is judged by the way it treats its most vulnerable members then our society is sorely lacking.  We need to take a long, hard and deep look at why that is - starting from the very beginning.

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