Saturday, 18 May 2013

Dear Collin...

Dear Mr Collin Brewer,

I am sure you know what this post is going to be about.  There have been many like it in the wake of your comments about disabled children.  I doubt very much you will ever read this, but on the off chance you are having a late night game of ‘Google me’ and stumble across this, I hope that you will read on and try to understand where I am coming from.

You see, my response to your comments last week is coming pretty late.  Partly because, having heard about your recent ill health, I was unsure how to respond.  Although, as many fellow bloggers have pointed out, the children at the sharp end of your recent comments are in ill health and this did not prevent you from expressing your views.  However, let me start by saying that I genuinely wish you the best and sincerely hope that you are doing well. If you were just another individual making some thoughtless comments about disabled children, I would simply ignore and move one.  But I am afraid you are not just another individual.  You occupy a position of trust and authority within local government.  As a believer that politics should and must be governed by democratic response, I feel it is important for as many people to express their counter-views as possible.

My delayed response is also a reflection of my own emotional investment in the subject matter.  You can’t fail to notice that disability is fairly fundamental theme within this blog.  I am proud to be mother to a beautiful, funny and rather lovely disabled child. You can imagine how reading headlines stating that, ‘Disabled children should be put down’ could elicit a less than rational response from me.  It’s a little like the dinosaur in Jurassic Park.  Have you seen it? I wouldn’t call it a classic, but it’s good for a bit of early evening escapism.  There’s a little dinosaur towards the end (I hope I’m not ruining it for you).  It looks fairly friendly and innocuous and bounces up to say hello.  But then in a split second its spikes pop out and the next thing you know it’s shooting venom. That’s a pretty much a reflection of my initial thoughts around your comments.  I want to be all helpful, logical and fair, but then out of nowhere a bit of venom flies out and rounds off a sentence with an unnecessary bit of sarcasm.  I shall do my absolute best to keep the dinosaur locked up where it can bounce merrily away looking inoffensive.

Bouncy, well behaved dinosaur
I have to say that when I heard your first comments about euthanising disabled children, I actually felt sorry for you.  When I read the headline that you had apologised and stepped down from your post, I thought ‘poor man.’ This may come as shock to some people, but you see, despite my best efforts to be well read and informed, I am very naïve.  I thought that it was all a big mistake.  I thought that you had been misrepresented by the press, who were looking for an easy headline and had changed what was at the heart of your comments.  I thought that you may have been trying to make a point about euthanasia and helping children in the most extreme levels of pain and distress.  It’s not a point I would necessarily agree with, but I thought it a bold issue to raise and I assumed you had been misunderstood.  I couldn’t begin to fathom that someone would actually say that a person’s life should be eliminated in the name of cutting costs.

So when you were recently re-elected, you can imagine my shock at your next comments.  When you compared disabled children to farmyard animals, stating, ‘if they [farmers] have a misshapen lamb, they get rid of it. Bang.’ When you confirmed, without a shadow of a doubt that you supported taking human life in the name of cost cutting, stating that, ‘the cost has to be evaluated.’ I was shocked. I have to say that your use of imagery was particularly striking, as you spoke about how these ‘misshapen’ lambs would be, ‘smashed against the wall and dealt with’.  That is one of the resounding statements that I find it hardest to shake from my mind.  It is the comment that revved up my inner dinosaur to its spikiest. But then I realised.  I could pick hole after hole in what you have said, but it will be pointless.  It won’t change your mind.  The most impossible competitor to enter into a debate with is one who lacks logic.  And your comments offer none what so ever. 

You see Collin, can I call you Collin?  Mr Brewer feels a little over formal and given that you have a perchant for comparing my son to livestock, I hope we can move beyond classroom style etiquette. You see, I could tell you that your comments make no sense, but it won’t change your mind.  I could tell you that based on your financial argument, you would also need to obliterate anyone with a long term health condition, the elderly and most likely anyone with a BMI over a certain level.  I could tell you that evaluating people’s worth based upon a contribution/cost equation is a slippery slope.  Would you apply this to all people?  How about those you deem likely to enter long term unemployment?  Perhaps those incapable of a logical thought process? (BAD dinosaur – back in cage.)

I could tell you that rounding off your comments with, ‘I don’t know exactly how much they [disabled children] cost’ does little for your credibility in this matter.  Nor does your on-going animal analogy and statement that, ‘we can’t have lambs with two heads and five legs running round.’  To be honest, if a single lamb was born with two heads and five legs, I would strongly recommend calling a leading member of the scientific community, which I am sure would be of more financial benefit than smashing its head against a wall.

I could tell you that many people throughout history have offered up similar arguments and ways to dictate society by determining life and death.  It really hasn’t tended to end very well or done much for their long term popularity.  There’s lots of widely available literature on the subject.  Can I suggest Animal Farm? I think you’ll like that one.

But seeing as all of this will mean nothing, I instead want to talk to you about impact. About the personal impact of what you have said.  You see Collin, you did something.  Admittedly it’s something that is easier to do since my beautiful boy entered my life, but overall it’s still a bit of a challenge. You made me cry.

Yep.  Whilst sitting watching TV one evening, having a little Google during the advert break, you made me cry.  You caused me to break down in tears right in the middle of Law and Order.  And it was a good one as well.

But it wasn’t for the reasons you think.  It wasn’t what you said.  No, it’ll take a lot more than that.  It was the responses to what you said. 

You see in a matter of hours the disabled community began to respond.  And they did so with unbelievable elegance and poise.  The bloggers began to blog, the forum posts began to appear. You can read some of those responses here.  There was little ranting.  No vitriol.  Mothers and fathers pushed back their knee jerk protective instinct and responded with far more grace than I have available to me.  You made me cry, because I was so in awe of this response.  Because I realised that there isn’t a day that goes by that I don’t depend upon this community in one way or another. In the things that I read, the information that I get and the questions that they answer.  I cried because whilst I am a tiny part of this community, only just entering into it, I am so immensely proud of it.

Monday, 6 May 2013

A Word About My Hero

I want to take a little moment to talk about my hero.  And no, its not Spiderman (though he is kinda cool).  Sadly, my hero doesn’t get the benefit of superpowers or constant adulation.  In fact they probably wouldn’t ever consider themselves to be a hero.   Like many people, I’ve never actually met my hero.  I didn’t really expect to come across them when I did and I doubt very much you will have heard of them.  My hero isn’t famous; they don’t appear on television, or grace the Houses of Parliament. They aren’t rich, or hugely successful in business.  No, My hero is an 82 year old woman named Sadie.

Sadie came to me at exactly the right time.  Four weeks into a hospital stay with Little J, I was exhausted and if I am honest, pretty shell shocked.  We had recently left the High Dependency Unit and were now sat in hospital, staring at white walls and waiting.  Waiting for someone to do something other than look perplexed.

Our ward was due to be renovated and so, along with every patient, piece of equipment and medical chart – we were on the move.  I pilled all of Little J’s bottles, clothes and toys into his high sided cot on wheels, popped the SATS monitor on the top and off we went.  A welcome break to the monotony of daily hospital routine.  Even more welcome was what we found in the new ward.  We had been moved from the loud, chaotic open plan section, to a smaller two person room - score. There was a big comfy looking chair in the corner that I could sink into – result.  As if sensing my tension release, Little J fell asleep across my chest – Unheard of.  I had a newspaper within arm’s reach – amazing.  It was a big, fat broadsheet – dammit.

Now I don’t mean to sound small minded.  I care immensely about world events and ever increasingly about the ins and outs of politics.  But in that moment, I really just needed to lose myself in an article about who would be the next X Factor judge.  No words with more than two, maybe three syllables.  Given that this was not an option, I figured that the magazines were probably easier going than the main body of the paper.  So, after an epic one handed battle against gravity, I managed to grab the entirety of the thick, heavy Sunday paper package and shook out the magazines hiding in the middle.  It was here that I met my hero.

The lead article in the magazine was focused on disability.  But I didn’t approach it with trepidation.  In fact, to begin with, I read it as an interested and compassionate observer.  It did not evoke a mental connection to the little boy whose head I would gently stroke as I turned the page.  The circumstances were so completely different to ours.  The article was about thalidomide.  It was following the stories of the now adults who were born with life changing disabilities due to a drug given in pregnancy.  Some of the stories were heart breaking.  They were tales of physical and social difficulties which had proven immensely difficult to overcome.  Some were uplifting and inspiring tales of triumph against adversity.  Then last of all, there was a picture of an old lady with her arm wrapped tightly around a grey haired man in his fifties. 

This image seemed different from the others.  The man’s eyes didn’t meet the camera; he wasn’t smiling for a posed shot.  It was clear that his disabilities were complex and most likely, cognitive.  But it was the old lady next to him who truly drew me in.  She wasn’t smiling either, but her image told me more than the paragraph below.  The physical discrepancy between her and the man I presumed to be her son was striking – he was bigger and stronger than her. But her mental strength shone through. He arm was wrapped around him protectively and lovingly in equal measure.  This was Sadie – my new hero.

Let me start by saying that I don’t know much about Sadie beyond this article.  This is purely my interpretation of her image and her story.  In fact, I hesitated in publishing this post, in case my interpretation is inaccurate, but I think Sadie’s story deserves to be told.  I hope if she ever happened across this post, she wouldn’t be offended by my perception of her.  I can’t link to the article, as it is not online.  So instead, I will just to tell you what the image meant to me personally. 

The most striking thing about Sadie’s picture was her expression.  It was stoic. There was an iron will.  Her eyes told you that despite her small stature, say a word against her son and you would hear plenty back.  But there was also softness.  A sadness in her expression that made it clear that the world had pushed her harder than it ever should, repeatedly.  But most of all there was pride.  Unflinching, unapologetic pride.  She was proud of her son, proud of her life.  And she had every right to be.  Her achievements are unbelievable and put me in my place every time I find myself feeling angry at the failings of the ‘system’ or the hurdles that world puts in front of us.  Sadie shows me what pure love and dedication can achieve and pulls me back before I trip on those hurdles and plummet into the territory of ‘bitter’.

Before reading this article, I had no idea that thalidomide could affect the development of the brain.  In the case of Sadie’s son, that was exactly what happened. At 82 years old, she holds together the walls of their house through sheer determination.  She gets up at 5am to do the shopping before her son wakes.  She cleans the house from top to bottom.  She rakes the garden, puts fresh flowers on display.  If you saw her in the street, carrying home her flowers, you would think she was an old lady from a bygone generation, off to make tea in a Formica kitchen and idle the day away.  You would be wrong.  Sadie maintains her house, keeps her flowers fresh to start each day anew.  In her words, ‘if we have a bad day, I just wipe it away, it never happened.’

I would love to say that I have the resolve and energy of this 82 year old when it comes to keeping my house clean, but I would be lying.  However, I totally understand her need for this order.  When Little J goes down for his daily nap I often become a woman possessed.  I desperately wipe, scrub and tidy.  I rarely complete everything that I need to.  But the things that I do, I have to do to perfection (I am obsessed with a smooth, wrinkle free duvet cover – strange, I know). The reason is not for ‘normality’, or to maintain a façade; it is a necessary process to maintain a sense of calm.  When you live with the fears and challenges that come with a disabled child, life is always a short step from chaos.  The simple act of pulling the duvet taught is a means to exercise control, stop us from spiralling.  Sadie and I are I from different generations and in many ways worlds apart – but we have so more in common than I would ever have expected when I first turned the page of the magazine.

Sadie also offers me a huge sense of perspective. Nowhere in the article is there any mention of respite.  Just a sentence to say that she feels no one else has been able to ‘cope with’ her son.  He has never been to school; she has been a carer day and night for over fifty years.  Sadie puts my whinging about a lack of local authority support into sharp focus. In a couple of years, I can send Little J to a supportive school environment, passing over the immense challenge of developmental responsibility for a few hours a day.  I get to live in the hope that Little J will achieve independence as he becomes older.  In fact, the more I think about it, we have so much in our favour that I rarely take the time to fully appreciate.

But I owe Sadie more than just perspective.   By comparison, I have a child who is not yet recognised by most casual observers as ‘disabled.’  But when I am asked questions about why he cannot do something, I think nothing of telling people.  In fact, I am probably a, ‘honk for special needs’ bumper sticker short of annoying.  I take it for granted that we have the right to walk the streets.  If anyone were to say anything abhorrent to us, I would retort with a hastily made up, but official sounding sentence about how they were breaching the Disability Discrimination Act.  This is the world that I live it.  Is there prejudice in it – oh yes, far too much.  But can we find our place within it – absolutely.  That wasn’t necessarily the case for Sadie. 

The world was a different place fifty years ago.  Reading through the various stories of families affected by thalidomide, the pressure to institutionalise severely disabled children is a recurring theme.  Fifty years ago, disabled children were even more marginalised and simply not a visible part of society.  I imagine for Sadie, raising a child with a cognitive disability, this must have been incredibly hard.  But she refused to give up.  She refused to let go.  She even had to battle within her own family.  When her son was ten, her husband demanded that she got rid of him, sent him away somewhere.  So she got rid of her husband instead. 

I inhabit the world that I do because of people like Sadie.   Because of her strength, passion and refusal to give up.  One of the resounding descriptions from the article is of her son’s room.  Spotless and cleanly laundered, with a chair full of teddy bears.  A symbol of the innocence that comes from a life without independence.  A room that fulfils his care needs, but with all of the touches that come from care driven by love.  It is the distinction between the state system and the care of a parent.  It makes me fear my own old future – not from a fear of being a carer, but from a fear of not being able to be one.  The fear of old age and illness that keeps carers awake at night.  Then I have to push that thought away, because it touches a nerve too raw. 

So, that is how I found my hero.  The person who gives me perspective and inspiration.  That magazine came home with us from hospital.  Sadie took up residence underneath our coffee table.  Every few weeks I would go to recycle the papers and sort through the pile.  Every time, I would go to throw the magazine away, then hesitate.   Sadie even made it through a house move.  She found herself a nice little spot in one of the boxes, between the pointless nik naks and unread books.  Every now and then, when I need a reminder about how much I have in my favour and how much I can achieve, I remember Sadie.

So, thank you Sadie.  I have never met you and short of some extremely unlikely act of fate, I doubt I ever will.  I am sure you don’t recognise the enormity of what you have achieved in your life. I am sure you don’t think you have had an impact on anyone beyond your immediate family.  But you have.  A Big one.