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 30th 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.
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.
