Sunday, 17 May 2015

Confessions of the lucky

Eyes off the foot...just sellotape a leaf on.ok..
It’s been a strange old week.  A week which saw an unexpected majority conservative government take power.  A week in which social media has been a flurry of polarised comments.  With the left and the right exchanging blows on the deficit, the budget, the NHS, the cuts.  Oh yeah…the cuts.

I have stayed uncharacteristically quiet watching this debate unfold.   Mostly because it would just be too obvious for me to pipe up…yet again.  You may have noticed that despite my best efforts this blog occasionally tips a teensy bit into the political.  Not in terms of party – irrespective of where my personal views lie, I have very deliberately stayed away from mentioning party.  Because what interests me is policy.  And that’s unsurprising when you consider that families of disabled children are right on the front line of much of that policy.  So we have a tendency to talk about it.  A lot.  Admittedly an annoying amount sometimes (sorry bout that). And what has made it such a strange week is that all of a sudden, everyone else is talking about it too.

For the first time in my life – I am bang on trend.  I’m like gingham prints and clown trousers (yes…that’s a thing.)  I’m feeling like I should be sat in a bar in an obscure part of Hackney…chatting social policy whilst drinking artisan beer.   Except I’m sat at my table in the commuter belt, blogging about social policy whilst removing porridge from my hair.  Next year eh?

But my reason for not automatically crashing into the social media debate is because we are, in many ways, an inaccurate representation.  We are basically, phenomenally lucky.  And that makes it very difficult to speak up as parent to a profoundly disabled child.  Because I have very little right to represent that group.  We are a two income household.  We are moving to a house in a very lovely little village.  It’s no mansion and I am slightly terrified of the impending quotes to wheelchair adapt.  But still.  We are lucky.   So how can I possibly leap into a debate on behalf of a group where four in ten families are under the poverty line?   

To be honest, I can’t.  I can only speak about our experiences.  I can only tell you what happened to us.  That how we look like on paper doesn’t come close to the truth.  That there is a complex mass of challenges around work, childcare and housing that sit behind that picture. That we are pushing ourselves to be in that very lovely village, because it is one of the few local authorities where there is childcare for disabled children under five. I won’t write about childcare again, I’ve bored everyone to tears on that here and here.  But what I can say is that there was a time when our options seemed very limited indeed.

There was a point where we were stuck.  Wedged right in the middle. Whilst we were lucky to own our home, we could not move ourselves somewhere big enough to wheelchair adapt on one salary, there was no adapted rental option available and the advice from our local authority was to move to council housing.  Only we didn’t really qualify.   We needed to earn more or earn less. And unfortunately, the current system is only designed to push families of disabled children in one direction.  Those families are facing increasingly stark choices.

What changed our situation was pure, simple luck.  A paperwork cock up went in our favour and enabled us to access some degree of childcare.  I won’t wax lyrical on that for fear that someone may want to undo that cock up (I can feel the eye of the town hall swinging towards me like the eye of Mordor as I write that). But it was luck.  Not hard work.  Not winning a logically, legally supported battle for support. 

We aren’t special.  We aren’t clever.  We are just very, very lucky. 

And that matters because of the other thing that has kept me quiet in the last week.  I’m having an increasingly emotional reaction to some of the media coverage.  And I need to get that under control before joining the debate.  It usually comes when I foolishly scroll down on news articles about disabled children.  When brain and index finger have a moment of disconnect.  When I reach the comments section and inevitably, I find them. 'Those' commenters. The ones who are unfailingly vitriolic in tone.  They talk about ‘free houses’, ‘free cars’, ‘free money’ (really?)  They drift into completely unnecessary stereotyping.  

What those commenting fail to accept is that families of profoundly disabled children are, by necessity accessing state services.  That it is not a matter of choice.  It can take a whole team of people just to facilitate some degree of ‘normal’. We walk in a different world.  A world that is often misunderstood even by those within statutory services.  I remember an accusatory nurse, firing questions at me on an open hospital ward about why we had a social worker.  Eyes thinned, face filled with judgement.   He had absolutely no understanding of the disabled children’s team or that they even existed.

And these stereotypes are having a real impact.  A survey from Contact a Family showed that 70% of respondents felt the stigma of claiming disability benefits for their child has increased in the last two years.  There is an 'us' and 'them' rhetoric that has stealthily and steadily crept into public consciousness.  There are some who would call it an act of masterful misdirection.  A PR trick of the highest order.  I'm not sure if it is that deliberate.  But there is no doubt that the families of disabled children have felt the stinging depth of cuts to public services, particularly local authority services. Yet they are perceived by many as somehow privileged.

And the cuts will continue to come.  They will.  And if you think that because we own a house and are a working family they will not impact us, you are very wrong.  We are still, undeniably state dependent.  We are dependent for vital equipment and we are dependent for respite support.  Like so many, we cannot look to the future of our respite provision with confidence.  Local authority budgets for disabled children are not ring-fenced and will no doubt be in the firing line again.  And I feel for the staff on the front line – I really do. Whilst I may have entered into many debates with the local authority, mostly around childcare; there have been so many times where it has felt as if social care and I are merely stood shrugging at each other in mutual defeat.

And I know that the challenges will only get harder with time.  I made a deliberate decision some time ago not to actively engage in debate around adult services.  That may sound blinkered.  Which would be accurate, because it is. But it is also fundamental self-protection.  It is the result of a piece of advice from a far more intelligent and experienced mother than me.  A parent to two disabled children with very different outcomes.  She saw me managing a child with an uncertain medical future, yet panicking about what would happen when he reached adulthood.  She said one line that has shaped my approach for the last year, ‘don’t do that to yourself.’ 

And she was right.  But now I am ready for that approach to change. Because I can’t completely ignore it.  The information is right there, brushing up against me and no matter how hard I close my eyes, it’s impossible not to take a peek.  It is impossible not to become increasingly aware that my foolish belief that we would control our son’s future in adulthood was misplaced.  That when he legally becomes an adult, the forceful hand of the state could come swooping into our little world more than I expected.  That my vulnerable, loving, non verbal, totally dependent child’s future does not lie in my hands.  That the policies taking shape now, may well dictate what the future looks like.

And that is frightening.  It is catch your breath, hold on tight and push down the acrid rising panic kind of scary.  I’m not looking too hard quite yet. Because I might not like what I see.  But I can’t ignore it for ever.  And with two recent tragedies involving young adults sat right on my doorstep, I’d be a poor excuse for a parent and a human being to ignore the well-developed, heartbreaking and ever evolving campaigns being led by their families.

And this should matter to all of us.  Because at some point we will all be state dependent.  Whilst I want to believe that my later years will consist of sneaking gin into the old people’s home and organising late night zimmer-raves when the staff least expect it (I’ll see you there).  I imagine the reality will be a little more grim. 

Because here’s the thing.  This sucks.  All ways round.

And I genuinely don’t mean that as a political statement aimed at either side.  I don’t believe that even the most extreme media stereotype of the right would claim that cuts to public services are an inherently good thing (from their corner office whilst eating a roast goose). Similarly, I don’t believe that the extreme media stereotype of the left would claim that national debt is an inherently good thing (whilst chaining themselves to a railing and petting a rescued goose).  And whilst we all know that those stereotypes are in no way reality, media coverage and social media often show a degree of polarisation. One or the other.  When in fact we all have one thing in common….the extent to which the whole picture generally sucks, not matter which side you are on.

Whilst I love political debate, at some point we have to stop being so polarised and come together. Because the reality of austerity means that this is not going to be a golden era for public services.  And that won’t just be hard for a few of us, but many of us.

So at some point we are all just going to have to metaphorically hug it out.  Whilst I hope the conversation continues, I really do, I know in reality, the current level of interest from the mainstream will most likely wane and fade.  But no matter where our individual politics lie, we can all translate these conversations to positive action. 

For me, it will be more involvement with small voluntary groups (many of which are seeing their statutory funding levels decrease).  It will also be an effort to get to know the parents of disabled children in our area when we move.  Because sometimes, it’s the little things that matter when you are pushed to the brink.  Just doing normal people things like going to a coffee or going to the pub. 

Because we all need that.  And as time goes on and services change and evolve, some of us will need it more than others.  Sometimes I can offer support.  And I pledge that wherever I can, I will.  But alongside that, I accept that, sometimes, the frustration will rise, the fear will set in and I will be the one who needs it. 

So if you're offering…mines an artisan beer (clown trousers optional).