SMA Awareness Week: Some (possibly controversial) musings

For those of you who know me well, you will know that historically I have purposefully stayed away from all things related to disability.  This is partly because I reject the notion that if you are disabled then you should automatically be involved in that world - it would be extremely racist to suggest black people should only have black friends, yet a similar assumption about the disabled is commonly held.  It is also because, in my experience, the views of many disabled people I have met tend to diverge significantly from my own, and I therefore feel like I have little in common with them.  However, in recent years my once semi-militant views have mellowed significantly, and I am now tentatively becoming more involved.

As such, for the last year or so I have been volunteering for a couple of Spinal Muscular Atrophy (SMA) charities, either by providing support and advice or by writing articles for them.  This week, beginning on Saturday 23 September 2017 is SMA Awareness Week, which culminates on the 30^th with SMA Awareness Day.  In preparation, I was asked to write a short piece about SMA and why we should support research into it.  I will admit I had no idea what to write.  So, to get inspiration, I checked out all of the various websites, banners, flyers and the like.  I was overwhelmed, and indeed depressed, by the total negativity of absolutely everything I read.  Endless stories of dead children and babies, grieving parents, struggles at school, nasty operations, an inability to find work or form relationships, etc etc.  Very few stories of any people just getting on with it – the only stories that I found along these lines where written by people who have spent their lives banging the drum.  This, in my opinion, can also give a negative impression overall – because, unfortunately, in my experience the ‘disability brigade’ often go too far one way or another, EITHER saying how horrible everything is for them and how something must be done, OR saying how difficult everything is but “look at me and how well I doing despite everything”.  So, society views us either as wasters and whingers, or superhumans beating all adversity.  There is rarely a middle ground.

Therefore, I wrote this article.  My Godfather, himself a retired consultant anaesthetist, read an early draft and summarised my ramblings in one neat sentence: “Putting it simply the caring and medical services fit round the life rather than the life fitting round the services”.  However, as he correctly admitted, hospital doctors very rarely see it like that.  Perhaps, even if unknowingly, my piece was attempting to educate people along these lines.

So… As I said, I was invited to write a short article about SMA and why we should support research into it and raise awareness.  Although I fully intend to meet this brief, what I am about to say might be considered by many as controversial - if this causes offence to anyone, either those with SMA or their families, then I apologise.

In short - SMA is not necessarily always that bad.

Before I am bombarded with hate mail, a little bit of background about me: I am 36 years old and I have severe Type II SMA (borderline Type I).  With no exaggeration, I can only (just) lift a finger.  I use an electric wheelchair, need 24-hour non-invasive ventilation (NIV) and obviously require someone-else to do absolutely everything for me, 24/7.

However, despite this I am a Senior Research Fellow at the University of Reading and part-time lecturer at the University of Oxford, having obtained my doctorate roughly 11 years ago and working full-time in academia since then.  I am an internationally recognised scientist, have published significantly (including an undergraduate textbook several years ago) and have lectured extensively across the world.  I live independently from my family, employing a team of people that I manage myself with funding from my local Social Services.  Outside of work, I am an experienced traveller and am fortunate enough, either through work or pleasure, to have been able to visit countries within every continent.  I am lucky enough to have someone very special in my life, and we regularly indulge our passion for travelling and experiencing new cultures, languages and food.  At home, I am a keen foodie, enthusiastic home-cook and amateur restaurant critic, and am also an experienced yachtsman.

Now, I am most definitely not saying that my life is perfect - I have my fair share of problems.  I have bad days, like everyone else - regardless of whether they have extra needs or not.  I am certainly not writing this to boast.  The point I’m trying to make is that, if the will is there, then SMA is not always the barrier that many people assume.  Of course, I’m very aware that there are many worse-off people and children more affected by SMA than I - and many less so - but quality of life is a highly subjective concept and indeed some people, as has been reported in the news several times recently, would rather end their lives than live like I do.  Therefore, regardless of severity, SMA isn’t always the living hell that many people suggest, or rather it doesn’t have to be.

For those of you who are parents of someone with SMA - of course, I cannot speak for you because I am not yet a father.  I cannot possibly comprehend what it is like, as a parent, to be given that diagnosis.  But, what I can say, is that it is no longer the hopeless death-sentence that it was when my parents were told 36 years ago.  Research into SMA is progressing all the time, increasing rapidly with the introduction of treatments such as Spinraza, and this is one very strong reason to support future research into this field.  However, in the meantime, current technology (e.g. electric wheelchairs, NIV, eye gaze software, etc) exists to allow your child to lead a long, full and exciting life.  With your support, there is absolutely no reason why your child can’t achieve everything they wish, whether it’s a cracking education, successful career, a family of their own, etc etc.  Another thing I can say, connected to the beginning of that last sentence, is that the diagnosis of your child no longer means you have to give up your dreams and ambitions and be a slave to them (or rather, no more than any other parent).  My father, for example, has had a passion for sailing since he was 12, and now in their 60s my parents are only truly happy when out on the water.  He is, in the nicest possible way, a stubborn man - so the idea of giving up his passion just because he had a disabled son would have been completely ridiculous.  Fortunately, he is also a very resourceful man and pretty handy when it comes to DIY, so every single boat he has owned through the years has been modified slightly - a door added, a bulkhead removed, a seat fitted - to enable me to come along.  I was not always impressed by this, particularly as a stroppy teenager who wanted to see his mates rather than being dragged out sailing every weekend - but one of the many positives to come out of this was that I didn’t develop the sense of entitlement that, sadly, some disabled people possess.  Our family joke was, and still is, “the boat comes first”.  My parents did not treat me as special, unique or requiring bubble-wrap as protection, they just got on with it.  Therefore, your child’s diagnosis, although there will undoubtedly be difficult times, does not mean you have to forget about your own ambitions and treat them like they were made from crystal - you probably will feel like their slave, even after they turn 18, but that should have nothing to do with SMA.

For those of you with SMA, regardless of age - ditto the above sentiments.  Anything is possible, with the right mindset (both yours and those around you).  You have probably heard that many times before, as have I, and find it highly irritating.  You might be thinking “what does he know about what I’m going through, I’m different” - and my response would be “I don’t know what you are going through and yes you are different”.  I am not trying to be inspirational, and thoroughly dislike the often condescending tone of people who usually say this.  But the principle is the same.  Of course, don’t be unrealistic - if your ambition is to play up-front for Arsenal, you may have to modify your expectations somewhat.  But, being realistic, as long as the will is there, then no barrier is insurmountable - the problems only begin when the will is not there.  Working part-time for a disability charity does not have to be the best you can hope for, not if you don’t want to 4.  SMA does not have to define you, if you don’t want it to.  I will admit that I am often irritated by the numerous so-called ‘inspirational’ disabled people, who claim that they are not defined by their disability - yet spend every day talking about it, work in the field of disability, post on Facebook about it, etc.  I’m not saying you shouldn’t, just that it’s not the only available option open to you. 

Personally, I do not see SMA as something intrinsically separate - I have no sense of ‘me but with a disease’.  It is deeply ingrained into my DNA, as much as is being male or white, but that doesn’t mean it is the defining feature.  I do not really think about it, do not talk about it all the time (my Facebook timeline should confirm this), and certainly do not blame any of my problems on it.  I would probably have many of them anyway.

So, this SMA Awareness Week, I would urge everyone to absolutely spread the word and encourage people to support research into SMA.  Of course, pioneering research into SMA, to better understand it and perhaps one day find a cure, is a hugely worthwhile activity.  But it shouldn’t be the only aim.  In addition, I believe SMA Awareness Week should also focus on the positives, and all the good things people with SMA have done and are doing on a daily basis, some of whom go unnoticed because they are not constantly banging a drum.  In doing so, I believe it’s important to avoid the negative rhetoric of ‘curing this dreadful condition’ and rather concentrate on a better understanding of SMA, so that people with it are able to achieve as much as they want and parents of someone with it do not despair.  The overall point is just that sometimes, with the right mindset and a bit of luck, having SMA doesn’t have to be the end of the world.

Was June really the end of May?

Following the media and political furore of Friday 9 June 2017, the day after the snap General Election, we all now know the outcome.  As always, the social media platforms were awash with comments and rants, pretty much straightaway.  After the EU referendum last year, I also began ranting straight away.  This time, however, I have purposefully waited at least 24 hours before commenting - I wanted to have time to digest and assimilate, think and contemplate, reflect and meditate, before making my opinions known.  So, here goes.

Although I began yesterday morning thinking this was a good result, and that a weaker Tory government and stronger opposition was the best possible realistic outcome, now I'm not so sure.

There are, of course, positives, of which there were many yesterday.  Here are a few:

• Positive #1: May, and the Tories in general, got a well-deserved pounding, and May emerged yesterday visibly battered and bruised.  She made a massive gamble, and it spectacularly backfired.  She was arrogant and ran a complacent campaign, assuming that the people would simply fall in line.  She refused to interact with real people and U-turned on several issues.  She is now paying the price.
• Positive #2: Corbyn did an amazing job.  I will admit I was against him at the beginning, and still am against some of his policies.  However, I will take my hat off and congratulate him on a really good campaign.  He galvanised the youth resulting in an unprecedented turnout, brought back politics from the traditional sleazy image and achieved a huge increase in support.  He, and Labour supporters, should see this as a big victory, and I will eat humble pie and think much better of him from now on.
• Positive #3: The increase in left-wing support and decrease in right-wing ideology proved to the world that, despite Brexit, we are not all inward-looking self-serving citizens, and the virtual destruction of extreme right-wing parties (such as UKIP) is something of which we should be very proud.
• Positive #4: On a personal note, my constituency finally got rid of that Tory bastard Rob Wilson - who has repeatedly ignored several personal pleas of mine - and we are now Labour.  A well-deserved end to a nasty piece of work.

However, I'm not convinced we should be celebrating as much as some people have been.

At the end of the day, no matter how well Labour did, they still lost - and not by a slim margin.  Admittedly, it was always very unlikely they would win - and they didn't.  Likewise, although my chosen party made small gains, we still lost.  We were always completely unlikely to win - and we didn't.  The other parties in the progressive alliance either stayed the same, or in some cases made losses.

I therefore fail to see how it is the good news that some people are claiming.  Corbyn can call for May's resignation as loudly as he likes, but she will ignore him.  The Labour Party can try as hard as they like to put together a minority government, but the Tories are still larger.  The people have spoken and have demonstrated a rise in left-wing ideology, but the Tories don't care.  Ultimately, they are still in power.  They will still be able to get through all of the nasty policies they proposed, some of which will impact upon me profoundly.

Even worse, their failure to secure a majority has meant that their only option is to request support from the DUP, and undoubtedly will have to make concessions in order to get this support.  Until now, not many of us knew much about the DUP.  However, this is a party that was founded by the Rev Ian Paisley, the embodiment of hardline Unionism, and has been described as "one of the most extreme political entities in the British Isles...".  This is a party that is anti-LGBT+ (and especially anti-gay marriage), anti-abortion, anti-climate change and pro-Brexit.  Of course, assurances have been made by May that these sort of divisive and nasty opinions won't penetrate into Westminster - but if you believe that, you'll believe anything.  Of course they will.

Regarding Brexit: what sort we will have is still very unclear, as is the impact of the DUP on this process.  However, now that May has a stronger opposition, she will be forced to rely more heavily on her own MPs in order to get any agreement made.  Many of them, as we know, are hell-bent on a rock-hard Brexit.  So, in my mind, it's very plausible that she will be forced to go even harder than at present, just to get them on side.  The purpose of the election, according to May, was to destroy the opposition intent on confounding the Brexit process.  Another purpose however, much less publicised by May for obvious reasons, was to gain more of her own MPs, in order to be able to outvote the really hardline Tories.  This plan failed, meaning she now has to rely on these hardline Tories to get anything through.  So, for those of us against the process, this is a far worse situation then it was on Wednesday.  Moreover, she has now shown herself to be the exact opposite of strong and stable, which the Europeans know full well and will punish her for it.  She still believes she is the best person to negotiate, so I fear she will go into the negotiations next week and be eaten alive.  This will undoubtedly result in either no deal, or a terrible one.  I'm not sure which is worse.

So as I said, on balance, I'm now not so convinced that progressive liberals like myself should be celebrating yesterday's surprise result.  Corbyn said repeatedly that people, especially young people, voted for hope - however, sadly, hope lost.  If anything, this will just show the youth that their vote doesn't matter after all.  Labour might be a stronger opposition and Corbyn might be energised by this, but they still have no power.  Although bruised, May's control is still absolute.  She even managed to successfully retain her core vote, the older generations, despite seriously attacking them with a triple-whammy of the pensions triple lock, the dementia tax and winter fuel means-testing.  Yet they still voted for her.

So, returning to the title of this piece, I think the answer is absolutely not.  Whether or not she survives her own party over the coming months is unclear, but on the assumption that the Tories do make an agreement with the DUP, they are still in power and will be for several years.  Opposition is stronger, but still nothing more than that.  Therefore, how was yesterday cause for celebration?