The Far-Reaching Implications of the Assisted Dying Bill.

This is a debate I have quite deliberately kept out of for some time. The principal reason for this is that while I had and still have very solid views on the dangers regarding the societal efficacy of a change in the law, I wanted to listen to all sides of the argument and consider carefully—with as little emotion as possible—the position I found myself moving ever more strongly towards.

I feel I can now, however, confidently state that I am, with certain caveats, opposed to the Assisted Dying Bill.

Before I continue, let me just provide those who don’t already know me that well with a little background. I have a condition called Type II Spinal Muscular Atrophy. I am severely disabled. I use voice recognition software to dictate my writing and need assistance with just about all physical tasks. I am not, however, in pain. My quality of life—while some, viewing it erroneously from the outside, might foolishly think otherwise—is extremely good. I contribute. I take from life but I also give. I love, I hate. I am loved, I am hated. A balanced life, I’d say.

Generally speaking this is not something I need to explain. Those around me—family, friends, fellow writers, neighbours, casual acquaintances—usually get this. I am, I’m sure they would agree, a man living his life …

… and also, a man who does not want to be faced with the prospect of being thought of by some as a man waiting to die.

Now, this might sound like a fairly selfish and somewhat flippant view. I have already stated quite clearly that I am not in pain. So who am I to subject someone, however indirectly, to continuing pain simply because I’m concerned about societal perceptions of disability? Let me state as clearly as possible at this point that I do not believe that I have that right. My concerns, however, are very real—and I feel we need to ask in reply, Who are those who wish to die to subject others to a different kind of pain? The kind of pain that comes from misperception, social inequality, being seen as “second-class citizens”.

Because this is a very real possibility.

I vividly recall as a child, back in the 1970s, hearing kids half-joke about putting a girl I knew with cerebral palsy “out of her misery”. Kids being kids, right? Well, actually, no. Among some adults at the time there was still a sense that the humane thing to do would be to “let them die”. I have no doubt whatsoever that there are still people in the UK today with similar views—but the fact does remain that things have improved, that the general understanding that there are real, complete people behind the disability is now far more prevalent. The danger with such a change in the law is not only that it might be abused (let’s be very clear about this: no matter how many safeguards you put in place, something will go wrong—deliberately or otherwise: if people die through negligence when we are trying to save them, as so often happens, what might occur with these new practices?), but that it will rekindle prejudices that, while still there in some cases, are, after much hard work, on the decline.

Of course, this is all very easy for me to say. I am not “suffering”. If I were, would I not have the same rights as anyone else to end my life, as some argue? Well, yes, perhaps I would—but if the granting of that right impacts upon the life I now live (and, perhaps more to the point, the lives of others), as it indeed might, I like to think I would stand by this assertion even in pain.

There is an argument I so often hear. It goes something along the lines of “you wouldn’t let a dog suffer like that”. A real argument winner, that one. Except for a single point so often overlooked in this actually quite offensive statement: we are not dogs. In the case of our canine friends, the decision is made for them. We cannot know what they want. We assume that we are doing the kindest thing for them. While no one is suggesting that anyone other than the individual concerned should make the decision concerning their own life and death, it is nonetheless true that other assumptions (and, if misapplied, even that final assumption) will indeed be made.

My suggestion: focus on improved palliative care—and where it is a matter of “poor quality of life”, place the emphasis on improving quality of life … or (and this might be frighteningly cynical of me) would that be too expensive?

I’ll leave you with that thought.

© 2014 Gary William Murning

The Dangers of Veneration: A Few Thoughts on Jimmy Savile and Wayne Rogers.

Sometimes, if you wait long enough, popular opinion and the whole social and intellectual climate catches up with you.

I’m sad to say.

Over recent weeks and months we have found ourselves faced with some pretty harsh and equally necessary truths. For too long—especially in the cases of the always dubious Jimmy Savile and lesser-known individuals such as Wayne Rogers—we have held a default position of veneration for anyone who behaves in an overtly charitable way or who claims in some sense the title of “carer”. This is understandable. There are a great many people who work within the fields of charity and caring who are indeed committed, selfless and determined to promote and fight for the rights of the people they represent and, in many cases, love. Nonetheless, such blithe reverence has concerned me for years.

At the heart of my long-established concern has always been the vulnerability of those all too often at the heart of these lines of work. As my regular readers will know, I have a severe physical disability—one that means I am in many respects “dependent” on others to help with my various physical needs. I am, also, however, extremely fortunate in that not only do I have good people around me (principally my parents) but that I am also very capable when it comes to expressing myself (my pleasure, my concerns, my general thoughts, my ideas and stories, and, more importantly in the context of this post, my displeasure). I can, to a degree, empathise. I have—as explored here—a degree of experience, albeit historic, of the vagaries of caring within education, and I have, where possible, tried to understand the various issues from as many different angles as possible. But I do not consider myself vulnerable in the way that a great many in our communities are. That I can do what I am right at this moment doing provides me with the degree of protection that too many simply do not have. They, unlike you, unlike me, cannot express themselves—or, in some cases, they can but simply are not be believed.

And that’s what worries me more than anything. Lack of belief. A general unwillingness (don’t look at me like that, the headlines speak for themselves) to accept that the ostensibly charitable and caring among us can do harm to the very people they are meant to be looking out for.

Now let me be very, very clear about this. I am not in any way suggesting that everyone who works for charities, or who raises funds, is a self-serving predator. Nor am I intending to imply that all (or even a large minority of) care workers, at whatever level, are heartless bullies and abusers. Far from it. What I am, however, trying to highlight is just how important it is for us to acknowledge as a society that individual motivations for following such paths in life are numerous. Whether financial, vocational or simply because circumstance dictates that you have to care for someone close to you because no one can do it as well as you can, many people find themselves falling into these particular categories.

Further to this, however, it also has to be said that some—as far as we know, a very small minority—do specifically target such occupations because it affords them the opportunity of abusing such a privileged (I just want to emphasise that, privileged) position.

Something that has troubled me for many years: you’re sitting at home. You’ve had a busy day, you’re tired. You’ve just finished your evening meal and have had a few drinks. The TV is on and you have your feet up. With me so far? Of course you are. We’ve all been there in one way or another. The tide of televisual experience is washing over you, and you’re taking it in with half a mind. And before you know it, you’re watching some inane game show  The host introduces the guests and … here we go! We are being introduced to someone who teaches disabled children, is a care worker or who helps autistic adults live independent lives. How many times have you heard the game show host actually thank that particular person? If you are shaking your head at this point and saying, No, I can’t remember them ever doing that, you really haven’t been paying enough attention. Almost every time, without fail, the person is thanked, or commended in some way. Well, quite right, I hear you say. I, however, invariably find myself feeling, at the very least, extremely uncomfortable.

The vast majority of these people are indeed damn fine individuals doing extremely worthwhile jobs (individuals, it also has to be said, who are probably quite embarrassed by this kind of obsequious, game show recognition). But should we be thanking them? Does such public gratitude serve the greater good?

As already mentioned, people work in these fields for many varied reasons. I think for the majority, however, the principle motive is a love for what they do. This is not altruism. And while, yes, it’s right that the good things they accomplish should be recognised, celebrated and not undermined by political policy and social attitudes, it’s also important to understand that this is not always about sacrifice—and that veneration is not only misplaced but also, as we now know, very dangerous.

This should not, of course, provide sanction for a backlash of outright cynical mistrust. It is important that we view those around us realistically, that we understand that they are capable of great things—but, also, that some among us are perfectly happy to hide behind any public façade of reverence we might afford them.

While we should still take care about any accusations we feel we might need to make, it is even more important to bear in mind that the well-being of those who cannot speak for themselves will often depend upon our willingness to challenge established perceptions and that, on occasion, this will risk causing offence to the very workers we, when they are genuine, least want to offend. That said, I very much doubt that anyone within any of these professions who believes in what they do would argue with my belief in the necessity of this.

If we had followed this simple approach sooner, would it have prevented the sickening abuse of which we are only just becoming aware? Possibly not—though I feel certain in saying that it would most emphatically have made it a lot less likely.

© 2012 Gary William Murning

A (Possibly Sporadic) Return to Blogging.

The silence on this blog, I like to kid myself, has been deafening—but, on the whole, it’s more probably true that it has gone relatively unnoticed.

Nevertheless, I have been quieter than usual, and while thinking about this today I drew a few conclusions, finally deciding that maybe—just maybe—it was time for me to make a more concerted effort and return to “blogging as it used to be”.

So what prompted these “conclusions”? I’ve noticed over recent months that on Twitter (which I use extensively) I have become less inclined to say what I really think. There are a number of reasons for this. Firstly, with over three thousand followers you can be fairly certain that anything you say is going to reach a few people who don’t agree and who are prepared to let you know. This can be time-consuming and, ultimately, pretty pointless. Yes, I’m fortunate to have had many productive discussions/debates using this medium, but recently they have been fewer and farther between (possibly because others are beginning to share my own concerns?) Secondly, the danger of misunderstanding, when dealing with, in some cases, serious topics, is painfully difficult to avoid while only using 140 characters. Thirdly, while my Twitter stream is very much “mine”, it feels increasingly as if I’m in the middle of a crowded public place shouting rather rudely into the surrounding tumult. A sense of “ownership” of the space around one grants freedoms that I otherwise feel I can’t, or shouldn’t, claim. And finally, the climate is changing—dangerously, to my mind. I am, I like to think, a fairly intelligent guy who is always careful about what he posts. I know what to say and what not to say. But given reactions (in many respects understandable) by the police and judiciary over recent weeks and months to certain, admittedly reprehensible tweets by handful of people, I find myself all too often erring unreasonably on the side of caution—something that concerns me deeply.

And so I am going to at least try to revive my blogging appetite and address certain issues that concern me here. Comments on these posts will, on the whole, remain closed and only under certain circumstances will I open them up for debate (not because I’m anti-debate, as someone will no doubt insist, but rather because I have novels to write). I’ll aim for brevity—keeping the posts as on topic as possible, effectively treating them as an extended tweets. My approach will be very much the approach I used quite extensively at the height of my blogging phase of a few years ago: examining the all too often “accepted” version from as many angles as possible, occasionally playing the contrarian simply because no one else is. I won’t promise to blog every day, but I will promise to try to post honestly when I feel it’s required.

So what can you expect over recent months? Well, I think it’s fairly safe to say that I will definitely be writing about—as I have done in the past—the continuing assault on our right to cause offence. This is something that has an impact on so many aspects of the lives we lead, and I feel it can’t be discussed too much.

As well as this, I think it highly likely that I will be returning quite regularly to the subject of disability identity—how the media and, quite often, charities and activists, are shaping the way people with disabilities are perceived, often with laudable motives but with an almost complete disregard for the implied messages they are sending.

For light relief, you can also expect a little literary commentary, the occasional assault on religion, a liberal amount of disrespectful mooning at passing “psychics”, a general hatred of political entrenchment and binary arguments and … what have I forgotten? Oh, yes, the occasional update on my writing.

So, yes, sporadic it may be. Few and far between could well still be the order of the day. But on those occasions when I do post something, it should hopefully be worth reading—even if you don’t necessarily agree with it (which is perfectly acceptable).

If you consider this a good thing, please make encouraging noises below.

Read the free sample of The Realm of the Hungry Ghosts here.

Buy your copy of The Realm of the Hungry Ghosts now!

© 2012 Gary William Murning

New Article on Disability Horizons Website…

Yesterday, my article on what I learned from writing Children of the Resolution – and where it might lead – appeared on the rather excellent Disability Horizons Website.

Here’s a snippet:

I had many reasons for wanting to write ‘Children of the Resolution’. It was not intended to be a cathartic affair. The few daemons that had haunted me from that period had by this point been well and truly exorcised. Nevertheless, there were certain points I wanted to make – largely concerning the universal nature of “childhood”, how we all as children undergo very similar experiences, whether disabled or able-bodied, whatever the particular environment in which we find ourselves. My hope – or one of them, at least – was that it might adequately convey the joys and tribulations of the very specific childhood world I’d inhabited in such a way that those who had not been there would see how close these experiences were to their own. I didn’t want to tub thump, to vehemently proclaim ‘We are just like you!’ – I wanted to give readers the space to discover this for themselves – to grow indignant at the quite casual injustices, but also understand that, had circumstances been only slightly different, these experiences could have been their own.

Read more.

Read your free sample of Children of the Resolution, please click here.

To buy from the UK, click here – and American customers can buy here. (Also available on Kindle. UK. US.)

© 2011 Gary William Murning

The Myth of Disability.

Recent weeks have found me, when not editing outstanding projects, tentatively approaching research for my next novel, The Wisdom of Closed Worlds—making the first preliminary dents in the numerous websites covering the particular topics I need to address and spending a small fortune on Amazon for reference works.

The subject at the heart of The Wisdom of Closed Worlds—as the title of this blog post might suggest—is disability, or, more to the point, the history of disability in the UK with an emphasis on the 1940s and 1950s.

Now, as many of you will know (although quite a few may not, since I only mention it when it has relevance), I’ve been disabled since birth with a condition known as type II spinal muscular atrophy. A “severe” disability, I, although considerably limited physically by my condition, am most emphatically one of the more fortunate ones. Nonetheless, I have lived with disability all my life. I have no doubt that it has contributed to my worldview, my personality, my career choice, even. But it has never seemed all that significant. Not to me.

Recently this has become all the more striking. The disparity between how I view myself and how the world (or the nation, to keep it on a more workable scale) views people with disabilities has, frankly, reached a point that is now almost laughable—were it not in many regards extremely alarming. Repeatedly, I see headlines talking about what “disabled people” do and do not want, how they all seem to be responding en masse, with one voice, to, for example, proposed changes to the benefit system, and I find myself wondering just who these “disabled people” actually are. Because, whilst I am concerned that we should always have a fair and effective benefit system, I only rarely agree with the headlines I see out there. These proposed changes, however, are not what I want to address here. Let me simply put myself on the record as saying, for now, that I believe an overhaul of the benefit system has been long overdue. In such circumstances, it is vital that this is done responsibly, with the most vulnerable protected. It is equally vital, however, that we do not allow ourselves to fall into the trap of believing that everyone who claims to be disabled is disabled, or that, for that matter, all disabled people have a default setting of non-criminality. Whether the current government is getting the balance right, to be frank, is difficult to say, yet. Seeing beyond the scaremongering headlines and assessing the general effectiveness of policies that, in some cases, haven’t even been passed, yet, just isn’t possible. So this is something I will probably return to at later date, when the indignant press and bandwagon-jumping, opportunity-seizing charities have quietened down a little.

What I do want to address here, however, are the dangers of times such as these, and the way in which very well meaning people can so often contribute to very real misconceptions regarding disability.

Whilst reading this piece by Jayne Clapton and Jennifer Fitzgerald on The History of Disability: A History of “Otherness”, I was especially struck by the changing attitudinal “models” of disability throughout the ages—moving from the religious, through the medical and into the (current?) “rights-based” model. And I was, of course, especially affected by the way in which this impacts upon general and individual “identity”

These are things I have considered numerous times, of course. My novel Children of the Resolution touches upon some of these themes (it goes back, I suppose, in many ways to the sociological notion that it is societal reaction to disability that is the disabling factor rather than the disability itself). I had never, however, seen it so precisely analysed and explained.

The paragraph below struck a particular chord with me:

Yet, rights-based discourse, although employed as a political strategy, has also become a way of constructing disability by locking people with disability into an identity which is based upon membership of a minority group. Entitlements thus become contingent upon being able to define oneself as a person with disability. And the conceptual barrier between ‘normal’ and ‘abnormal’ goes unchallenged, so that while one may have entitlements legislatively guaranteed, ‘community’ which cannot be legislated for, remains elusive.

The very idea that I am somehow a member of a minority group is, frankly, something I find quite absurd. Like everyone out there who does not have a disability (although I would argue that we all have a disability, if we define the term broadly enough) I eat, drink, live, breathe, vote, have opinions, voice them, sometimes keep them to myself, watch crap TV, read good books, listen to music, fart, laugh, cry, love, hate and so on. In short, I exist in the same intellectual, physical and emotional world that we all, on the whole, share. Read my novels, and you will be struck by the inherently human nature of my characters—whether they be noticeably disabled or not. I do not live on the fringes of life. My disability and, more to the point, reactions and attitudes to it, do not in any shape or form truly define my identity. Any problems I may have in life do not (and its remarkable just how many people in social work of one kind or another still assume this) automatically mean that I have enough “in common” with someone who has similar problems for me to rub along nicely with them (although, obviously, this can occasionally be the case). I do not exist in some Wyndham-esque world where I am psychically and emotionally connected to EVERYONE with a disability out there, sharing their views and concurring on every point as the media and numerous charities would like you to believe (and, for that matter, neither do other people with disabilities). Disability is not some generic, unifying, victim-centric political theory—it’s a noun, an understandably useful umbrella term, and something that, frankly, we should all use much more carefully.

The final paragraphs of the above-mentioned article, whilst a little too “new-agey” for me to be entirely comfortable with them, address the future, and touch upon ideas that fit quite nicely with my thoughts above:

Some writers argue that we need to go beyond conceptions of constructed disability to a notion of universalism whereby, according to Canadian writer, Bickenbach, disability is actually a fluid and continuous condition which has no boundaries but which is, in fact, the essence of the human condition. And, as a condition which is experienced by us all, at some stage in our lives, disability is actually normal. This view is also supported by the Indian philosopher, Sarkar, who argues that bodily differences should not be allowed to mask our essential humanity.

At the level of our physical existence, diversity is a natural condition and the need is for us to welcome and embrace diversity outside of a hierarchical classification of difference. Yet, at another level, difference is simply a construction of ideology, not a state of reality – since we are all interconnected and have flowing through each of us the same life force. According to Sarkar, “the force that guides the stars you too”. Yet, the history of disability has been a history of seeking to construct hierarchical difference out of an essential reality of oneness. The challenge is to create the reverse.

And, so, in conclusion, what can we do to address this? The first step, I think, is to, where possible, try to think in the terms set out by Bickenbach. “Disability” is a sliding scale. We all fit on it somewhere—either towards the milder end of the spectrum, or the more severe. The scale is not fixed. It alters through life. Some people become more disabled as they grow older, some, disabled in childhood, actually improve into adulthood, before old-age kicks in and does its stuff. It’s one of life’s many variables. It does not define who we are (though, naturally, it can and often does contribute to one’s outlook, personality, opportunities etc) and it most certainly does not unite us all with one political mind and will.

So use the word with care. I don’t mean be politically correct and tiptoe around the poor little cripples—I mean think a little about those headlines, about how you share the too-numerous myths regarding disability. When you discuss the topic, discuss it as you should any other: rationally and with consideration, and always with the awareness that, yes, we all fit on that scale somewhere. Never assume that the phrase “oh, disabled people have it so hard” will automatically engender a smile of agreement from someone with a disability and, in short, remember what is, for me, the one most important fact: the “general victim” model of “disability” is despicable whoever perpetuates it. (Just for the sake of clarification, this is very different to situations where people have become victims of hate crimes etc due to reactions to their disabilities. I know some people out there will no doubt try to read this into my use of the term “general victim” model, but please don’t. You’ll be quite wrong.)

I have vacillated somewhat on whether or not to open comments on this post and have decided not to—not because I do not value your opinions, but, rather, because I simply do not have the time to enter into protracted debate on this. I have, however, activated the Rate This function at the top of this post. Please feel free to vote.

Read your free sample of Children of the Resolution, please click here.

To buy from the UK, click here – and American customers can buy here. (Also available on Kindle. UK. US.)

© 2011 Gary William Murning

The Shame of Never Knowing the Things That Were Never Told.

I’m no hero. I’ve never claimed to be and I very much doubt it’s in my nature to aspire to such things. Should circumstance demand it, I like to think that I would “do the right thing” – and I have, in my time, made the occasional stand of which I’ve been quite proud. But no more, I’m sure, then the next man or woman. Generally, on the rare occasion that I think of it, I consider myself an observer. Or, if I’m feeling particularly grand, a chronicler. I’m confident about the things I do – about, principally, my writing – but, nonetheless, I still, like everyone, have to battle self-doubt.

In short, I much prefer to get on with what I do without having to make the difficult decisions that occasionally arise in the, specifically, “professional” side of my life. But, of course, these decisions are unavoidable – and when a decision is called for, I do the best I can and hope against hope that the choice I make is the correct one.

I was faced with one such scenario fairly recently. Having shared my novel Children of the Resolution with my publisher, the decision was made that it was not the ideal follow-up novel to If I Never. Something with which I agreed. The two pieces are extremely different and, yes, I was concerned that my readers might not be all that receptive to a novel that was so clearly more serious in tone and theme.

The more I thought about it, though, the more regretful I became. Children of the Resolution is an extremely personal novel. Because of this, yes, I was concerned that I was not the best person to judge it. Heavily autobiographical in places, feeding off my own experience of the integration of disabled children into mainstream education in the 1970s/1980s, I was very aware that my memory could well have been colouring and shading the novel in ways that the reader ultimately would not see. But still I was regretful. Still I had a feeling in my gut that this book needed to be out there – that it, however imperfect it may be, spoke of a very unique place and time. One, indeed, that simply has not, to my knowledge, been documented in any form (at least from the perspective of those on the receiving end). And, so, as many of you will already know, I decided to self-publish Children of the Resolution (with my publisher’s blessing).

This novel is not yet widely available. It should, hopefully, be listed and stocked on Amazon et al around the end of this month, and listed in bricks and mortar stores at the same time. It is, however, available here – and those who have found themselves unable to wait for it to appear on Amazon have already started buying and reading it.

Something for which I am immensely grateful – and which has, quite typically, left me fretting through the silence of their reading! Wholly convinced within a short time that I had made the wrong call and that Children of the Resolution was destined to suffer the fabled “second novel syndrome” comments, I prepared myself, comforting myself with the knowledge that I could, if need be, withdraw it from circulation with the click of one button.

Blessedly, the first reactions have been everything I could have wished for. To quote one particular reader, Nicholas J Rogers (a gentleman whom I know would tell me if he thought it sucked like a big sucky thing): “[…] Children of the Resolution […] Opened my eyes to an entire world which, to my shame, I had never properly given consideration. Once again your key strengths are sense of character and sense of place. A real achievement.”

This in itself, I think, vindicates the decision. Nicholas speaks of “shame” – of an entire world that he hadn’t considered. But I see no shame there. Many people are, quite understandably, completely unaware of the aspects of “inclusive education” in its early guises that I explore in Children, not to mention its impact on those who experienced it. It isn’t a big story. It isn’t high drama or misery memoir exploitation. In many respects, it’s a fairly simple coming-of-age story. But its time and place, the sense of revolutionary change that, as is so often the way, failed to reach fruition… these are the things that, I believe, lend it a uniqueness.

A uniqueness that obliged me to share the truth that the fiction of Children of the Resolution, I hope, in its way acknowledges.

© 2010 Gary William Murning

Children of the Resolution – Announcement.

As some of you may have noticed, I’ve been fairly quiet over the past few days. There has been a reason for this – one that, ultimately, has led me to make a decision that I’m now actually quite excited about.

After discussing recent projects with my publisher, Legend Press, I have realised that not all my work will, by default, fit their very excellent list. My writing covers a wide range of styles and not all of my novels fall into the fast paced, plot driven scheme of If I Never. Much of my work is contemplative and – whilst it always has that page to page readability – is not always concerned with delivering thrills and spills. Legend’s focus on pacier, more plot driven work is certainly not something I’m averse to; I enjoy writing that kind of novel when a suitable candidate presents itself – but, naturally, I have to write the novel that most readily presents itself to me. To do anything other, I know from experience, is to sound a creative death knell.

This, naturally, leaves me with work that is simply sitting on my hard drive doing nothing. It’s work that, I believe, many of my readers will enjoy. I could, of course, submit this work to other publishing companies – something I intend to do with newer projects, those, that is, not suitable for Legend Press’s list – without impacting on future Legend Press novels (of which they should hopefully be more in the pipeline very soon). This, however, is a slow process and not appropriate for all of the projects I have almost ready to go.

I have therefore decided to self publish – for the time being – one of these projects, with the possibility of more should this prove successful. Something of a self publishing sceptic in the past, I’ve now come to realise that this could work quite well, in tandem with my existing, traditional publishing career, the self published work representing more personal projects – those I feel strongly about and which don’t quite fit the traditional publishing vein.

The project in question is one that many of you will already be very familiar with. A semi-autobiographical , character driven piece – Children of the Resolution.

This is completely my project. I expect to have it available within 6 to 8 weeks (I would ideally like it out before Christmas, of course, but that may not be possible). It is not yet available for pre-order but, by way of a taster, I do have the cover prepared. Let me know what you think!

Two sample chapters of If I Never can be read here.

To buy your copy of If I Never, please click here.

Also, UK Kindle users can now buy If I Never here. (US Kindle users here.)

© 2010 Gary William Murning

Hitchens on a Sunday. Amen.

After yesterday’s brief post featuring the video of Anderson Cooper‘s interview with the ever erudite and refreshingly honest Christopher Hitchens, I’ve noticed a couple of things.

1. My page hits have increased substantially.
2. I can’t help wondering how I myself, as an atheist and in many respects, to use Hitch’s preferred noun, anti-theist, will deal with what I’m sure we can safely assume is for each and every one of us an inevitability.

Last year – in fact it’s coming up to the anniversary – I had what ultimately turned out to be a not too serious sudden-onset medical problem that resulted in my being hospitalised at five o’clock in the morning. As many of my regular readers know, I have Type II (more or less) spinal muscular atrophy. In my case it’s categorised as a “severe” physical disability. Nonetheless, I’ve been fortunate enough to enjoy remarkably good health for many years. I’m disabled, not ill. Consequently, finding myself vomiting blood at five in the morning was something of a shock to the system.

Once at the hospital, however, it seemed that there wasn’t all that much to be concerned about. It looked like a fairly minor stomach bleed – most likely caused by the pinprick ulcers they eventually found. However, just as I was getting close to being discharged my Hb levels plummeted. We later found out that this was likely to have been a false reading, but at the time we didn’t know this – and given that they were having considerable problems getting a new, viable line into me… I was scared.

Of course, this was nothing like Hitch’s situation. But it’s as close as I’ve come recently. Ever, for that matter.

I was ill. Not as ill as any of us thought at that time – but I was weak, I hadn’t been eating and I think I was probably in shock. At one point, I can’t recall when, exactly, I seemed to click onto autopilot. I stopped thinking the way I normally would and simply focused on what was happening at that particular time. Things like writing novels, getting published, they became irrelevant. I sensed on that primitive level that death was a possibility – that it’s always a possibility.

So did I pray? Hitchens has talked about this extensively since his diagnosis. The religious among us – some, at least – trot out the tried and tested (and failed) “there are no atheists in foxholes“, sometimes just a little too smugly, and even dyed in the wool atheists like me find ourselves wondering what we’d do, even as we acknowledge that it’s something we haven’t as yet even contemplated resorting to in any real or meaningful way.

What many seem to completely miss when they refer to their foxholes is that for some of us, religion, the concept of gods, isn’t something from which we’ve escaped. It’s never really been there. Granted, we may have during our schooling gone through the predicated motions, but as adults it’s never been a question of rejecting god – he, she or it was never there to begin with. Certainly not in the way that people of faith experience. (I stress: for some of us.) And, so, the impulse to return to something in which we once found comfort just isn’t there.

And this is how it was for me. I’ve never depended upon gods. Even as a child, I never seriously asked expecting to receive. If I wanted love, if I wanted support – it was there, always, in the form of my parents. I didn’t have to ask.

So, no, I didn’t pray. I acquiesced to the knowledge of those around me – the doctors and nurses (although I wasn’t all that passive; I did constantly question) – and found the emotional support I needed in my parents. Had the prognosis been graver, would this have been the case? I’m pretty sure it would have been.

But just in case, let me quote Hitch on this:

As a terrified, half-aware imbecile, I might even scream for a priest at the close of business, though I hereby state while I am still lucid that the entity thus humiliating itself would not in fact be ‘me.’

Two sample chapters of If I Never can be read here.

To buy your copy of If I Never, please click here.

Also, UK Kindle users can now buy If I Never here. (US Kindle users here.)

© 2010 Gary William Murning

You Can Laugh at Disability.

I haven’t blogged for quite a while, I know. Life has been rather hectic of late — in a good, my-book’s-getting-published way, thankfully (more about that soon). So I thought I’d return, however briefly, with a bit of a bang.

It would seem that, once again, people are intent on telling us what we can and can’t laugh at. Physicist Stephen Hawking — a gentleman I happen to admire and respect a great deal — has been featured in a cartoon which shows two people discussing him and referring to the fact that he’s recently been seriously ill. The caption reads: “I wonder if they’ve tried switching him off and switching him on again”.

Now, I know. Bad taste, right? I mean, the guy was ill and, you know, disabled. We can’t laugh about things like that, can we? Well, if The Motor Neurone Disease Association is to be believed, no. It’s taboo. It’s forbidden — it is, they say, distasteful and mocks disability.

Speaking as someone with a severe physical disability, though, what do I say?

Firstly, Stephen Hawking does not need a charity to speak for him. He has a voice synthesiser, and the last I heard it was working just fine. I understand that the charity was, to a degree, speaking for those who cannot represent themselves. But even so, this in itself does not mean that they are right. (Just in case there’s any doubt, I think they are wrong.)

Secondly, it was funny. I laughed. As someone who is, in my own way, rather dependent on technology, it struck a chord with me. This cartoon was actually rather clever. It doesn’t just speak about Hawking and disability. It speaks about how reliant we’ve become on technology and, to my mind, the whole question of where man ends and machine begins.

Thirdly, humour at the expense of someone with a disability does not necessarily mean that they are being cruelly mocked. Yes, humour can, at times, be used as a weapon — but in my own experience jokes about my disability, jokes aimed directly at me by people I know, often have more to do with inclusion than anything else. We rib people in a friendly way to make them feel, at times, special. The friendly leg pull that says “you are one of us”.

Fourthly, is it just me, or are these associations/charities becoming just a little bit distasteful themselves in the opportunistic way they pounce on these stories — in an attempt, the cynic in me insists (or is it the realist in me?), in an attempt to promote themselves? After all, this particular cartoon featured in a regional newspaper and probably wouldn’t have come to the attention of more than a handful of people had The Motor Neurone Disease Association not insisted on speaking out about it and labelling it offensive.

Ultimately, I have to say I find the very idea of being told what I can and cannot laugh at execrable. To say, as has been said, that such a cartoon reduces Hawking to a condition and the technology he uses is, frankly, far more insulting to the esteemed professor than any cartoon could ever be. By all means, defend those who need to be defended — but I very much doubt that Hawking wants or needs this kind of representation. He probably found it amusing, too.

But maybe that’s too much of a leap for me to take so, instead, I’ll simply say this: if any charity out there ever feels the need to come to my defence without my explicitly requesting it, don’t. It’s presumptuous and offensive… one might even say prejudiced.

© 2009 Gary William Murning

Disability on TV.

A couple of nights ago, my friend, Lou, sent me a link via Facebook to this Guardian article regarding the complaints the BBC have so far received about children’s television presenter Cerrie Burnell, who was born with only one hand. At the time of writing, the article reports, the BBC had so far received nine official complaints from parents claiming that they cannot let their children watch because such a sight could “possibly cause sleep problems”, that toddlers find her scary and that — shock, horror! — they are being forced to discuss “disability” with their children before they are ready.

My immediate response was to shrug and say to myself, “Yeah, well, that’s stupid people for you.” My experience of disability (I have Type II Spinal Muscular Atrophy) has, generally speaking, been pretty good. I have always found people on the whole considerate and understanding, but, yes, there are idiots with prejudices and insecurities of their own. The relatively small number of complaints, however disturbing it may be, speaks volumes. The vast majority of parents watching this show, I’m sure, handled their children’s questions ably and got on with enjoying the show.

Which took me in a slightly different direction than some might expect. The Guardian article is entitled “It Is Parents Who Can’t Face Disability on TV” [italics mine]. Parents. Not some parents, it would seem, but if not all of them, a fair few, at least. Nine, in other words.

Now don’t misunderstand me, Lucy Mangan makes some excellent points — and the article is definitely worth reading — but there are a couple generalisations/inaccuracies that I feel need to be addressed.

Firstly, to reiterate the point I’ve already made, this was a very small number of parents. Lucy mentions that there were “many more blog postings” regarding the story, none of which she provides links to, and none of which I’ve read. Knowing the blogosphere as I do, however, I’m quite certain that those complaining about this television presenter will have been in a very small minority. There will be plenty of people shouting them down.

Secondly, on the point of parents not being able to “face disability on [children’s] TV”… well, frankly, this is actually quite inaccurate. In the early 1980s I, in my electric wheelchair, wearing my Milwaukee spinal brace, appeared for eight weeks on the Yorkshire television children’s programme Book Tower. I was very visibly disabled, and the spinal brace in particular will no doubt have raised a few questions in some households. Yet, as far as I know, there were no complaints.

More to the point, the producer of Book Tower at the time was a very talented lady called Anne Wood. Anne went on to form her own production company — Ragdoll Productions, the company behind, amongst other things, the Teletubbies. Anne’s work in the intervening years has quite often focused on preschool children’s television, with programmes such as Rosie and Jim, Brum and others, and a number of times that I know of (and, not having kids of my own, I’m not exactly an avid watcher of her programmes… no, really!) children with disabilities have featured.

Disability is not something that is new to children’s television. In fact it seems to me that disability is featured more on children’s television than any other area. Even many non-Ragdoll Productions shows for children have and do feature people with disabilities (Balamory springs to mind.)

So, in conclusion, yes — there are stupid people who will try to inflict their stupidity, bigotry and insecurities on others. The best thing we can do is shame them, talk about the ridiculous statements they make and, even, I would suggest, heap ridicule upon them. But when we respond to such comments/complaints we really need to be careful that we don’t inadvertently alienate the very people who are on our “side”. The vast majority of parents are intelligent and responsible, and whilst television could do a much better job with regard its representation of disability, children’s television has been at the forefront for a number of years, without a complaining parent to be heard.

© 2009 Gary William Murning