Fat Disabled Bloke

[fatdisabledbloke]

Defiance

I've defied the odds, I've defied the evens, I've defied the gods, I've defied the Stephens(!). I've defied all who thought an early demise I would meet, Most notably amongst them… Great Ormond Street (gosh!). They neglected my well-being and in particular my spine, Abandoning my welfare to its 'inevitable' decline. I've defied my father, and my grandfather too, Both of whom kind of told me, "there's no point in you!". I've defied all the stresses that've tried to push me under, They continue to test me, I still cast them asunder.

But who can say, they might yet have their way, But 'til cometh that day, I will keep them at bay.

I've defied all the germs that have attacked my resistance, I've defied all the people who reject my existence, I've defied the landlords, I've defied the law (Billy Bragg reference there), And I'm still defying those who exclude me and my chair.

But has it been defiance or has it been just luck, Well I'm still here defying, so who gives a fuck?

[fatdisabledbloke]

The Point Being…

When my heart stops beating, I will cease to be,

Surviving only through a memory.

And when those memories too have passed,

What will there be of me to last?

Photos, videos, writings too,

But nothing of any significance, true.

So again and again I ponder this:

Why on earth do we exist?

 For those with faith, and I envy you,

You see this more as a “passing through”,

Part of the journey to eternal bliss,

Presumably explaining ‘all of this’?

But that, my brain, just can’t compute,

I kind of wish it would then I could follow suit.

But that’ll never happen so once more, please explain

What is the point of ‘all this’ again?

 “Your kids and your grandkids… they’re your legacy!”

Well, yes, that is true, in that they descend from me.

But that doesn’t really justify why I’m on this earth,

Apart from reproduction being liable for my birth.

But surely that is separate, we’re not just here for propagation,

And the fact we are sentient gives us choice on procreation.

With my great anxiety being, about all those who descend,

Is that a future generation will be present at ‘the end’.

 “But it’s all about the journey and not the destination!”

Meaning what… focus on my life and not its ultimate cessation?

So it’s all about experiences and social interactions?

With how I affect others (and them me), providing a ‘distraction’?

But that is just a subterfuge, a coping mechanism,

And goes nowhere near resolving my query’s scepticism.

And what about those whose journey, through no fault of their own,

Makes them want to get off early… Does your theory that condone?

 So as far as I can ascertain there is no point in being,

But that’s just how I see things, it’s not something I’m decreeing.

“I didn’t ask to be born!” is so apt because it’s true,

Brought into this world with no choice, with life bestowed on you.

You just have to make the best of it, from cradle to the grave,

And how long or smooth that route is depends on how it’s paved.

Status, health, finances… your family and friends,

Like oxygen… nutrition… are what sustain ‘til journey’s end.

[fatdisabledbloke]

Wasting

written February 2003

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"It’s good he’s made it this far … you know what I mean.” I overheard my dad saying to my nan on my 18th birthday.  I overheard him saying it again, later that same day, to my sister-in-law.  Finally! I’d discovered the conspiracy. The secret, to which only my sister had alluded on occasion of spite and anger (“You won’t live to be 21 !”) had at last been revealed.

My mortality now suddenly ‘in my face’, my childhood naivety died that day.  But when would I?

Although I am sure that my dad saw me eavesdropping, it was a very long time before I confronted him or my Mum about my birthday revelation. I cannot say why.  It is possible that I convinced myself that it was a misunderstanding on my part; I may have got the wrong end of the stick. But by avoiding confrontation, the truth could neither be denied or, more importantly, confirmed. The uncertainty was easier to live with than an undesired certainty.  It may even have been in some vain hope that my dad was referring to somebody else.  I don’t know.  All I do know is that life post-revelation started to seem increasingly bleak.

It wasn’t long after this that my parents and I moved to rural Norfolk. Unemployed, unmotivated, immobile and isolated -  waiting for the grim reaper to put in an appearance at any time - I soon slipped into a state of depression. The internet was relatively new, and although I had access to it, instead of using it  to search for reassuring information on my impairment - I used it solely for chat (looking back a pastime that probably benefited me far more than any scientific data would have). I started having panic attacks about dying, not just over my own demise but over my Mum’s also. They would nearly always occur at night whilst laying in bed, during which time my still active mind would invariably contemplate my own insignificance against the vastness of space, the universe etc. I would often shout out loud in order to distract myself, and I always slept with the light on.  To this day I never go to bed until I am sufficiently tired to go ‘straight off’; a legacy of the panic induced by my ‘wandering mind’. My doctor suggested anti-depressants and/or counselling. I discounted the former and postponed the latter.

The first real moment of change came when I needed a ceiling hoist put in at home. My OT took me to the home of some of her other clients to see one ‘in action’. They were a married couple, both of whom used powered wheelchairs, like myself, with it transpiring that they both actually had the same disability as me (I didn’t know anybody else with it)  But they were both in their 50s or even 60s !  How was this possible?  They were both affected to the same degree as me, and they told me that this had been the case all their adult lives. This was brilliant.  At last I had a role model, role models even, to inspire me.

My meeting the Wymers seemed to be a catalyst for change; change for the better. Within the space of a few years I got a job (a real one!), I learnt to drive, and I got my own place; all the things I was never expected to do. Thoughts of my early demise seemed to vanish. I started to realise that my worrying about dying was a pointless exercise, and one which had more or less brought a premature halt to my living.  My confidence in this new philosophy was knocked, however, when the Wymers both died within a short space of time.  And it was only through the realisation of what a great life they had had, and the fact that they had enjoyed a relatively ‘good innings’, that I managed to ‘keep with the programme’. The fact that I had now met several other people with my impairment (of a similar age to me), all with positive outlooks, also helped enormously.

With confidence in my actually having a future now high, I left my job (yes, I voluntarily left a real job!) to return to further education; that which, as a teenager, I’d presumed to be a waste of my precious time. I completed an Access course and then embarked upon a degree programme.  Everything was going so well.  It was then that my world imploded once again. My Mum died.  I dropped out of university and back into depression. I thought I would die (part of me had always expected to go before Mum), or at least that I would return to the old days of panic ridden angst. But I didn’t. Instead I went through the ‘natural’ stages of bereavement; legitimately grieving death rather than irrationally anticipating it.  I did need some counselling, which did help, but ultimately I survived. I returned to university the following year and have recently finished with a First Class Honours Degree.

That initial overheard conversation was now half my lifetime ago. My biggest regret about it is that I let it control and consume far too much of my life. I now have a partner, and two children, something else that not too long ago would have been seen as being beyond me (by myself included).  My partner now has her own fears over my life expectancy. She doesn’t know how she will react if something happens to me; how she will cope when it does. I do understand her concerns but, perhaps selfishly, I want to convince her that worrying about it only wastes the time that we have together now. To this end I now use the vastness of space, the universe etc., and our insignificance in comparison to it, in a positive way.  After all we can’t do anything to prevent the inevitability or finality of death, whenever it should happen, so why waste our lifetime worrying about it?

[fatdisabledbloke]

I am Spinal Muscular Atrophy type II.

I wrote this in response to the Tania Clarence murders of her 3 children with SMA.

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I am part of you before anybody knows there is a you to be part of.

I am given to you by both of your parents, equally, although your siblings share a 1 in 4 chance of me being part of them also, so don’t take it personally.

You will conceal me until you are about 15-18 months old, at which point you will gradually start to disclose my presence, through your refusal to conform and develop “normally”.

You may crawl but you won’t stand, and therefore you certainly won’t walk, however much you are encouraged and goaded to by those closest to you (this is done out of love but also out of the fear that you might not be “normal”).

After an initial period of suspicion, and then detection and investigation, firstly by your parents and subsequently by increasingly more specialised medical professionals (which will include physical examinations, blood tests and ultimately a muscle biopsy), I will be exposed as your lifelong companion.*

I will most likely be presented as devastating news - an unwanted undesirable - by the professional relaying the results to your guardians, and hence it is likely that they will regard me in the same manner. And as you develop a sense of understanding, it is possible/likely that you will feel the same way.

That is because the prognosis of our life together will probably be presented as one that will be at best difficult, at worst desolate, with me being portrayed as the bad apple who will ultimately destroy not only your life (no doubt prematurely), but also the hope of any “normal” family life that either your parents or siblings may have wished for. I say probably because there is always the slightest glimmer of hope that the news will be given by somebody more enlightened in their thinking, somebody less pessimistic and more positive where physical impairment is concerned, somebody who is more informed and therefore able to inform in a realistic way. We/I can always hope…

Thus it is at this early stage of your life, before you are even aware of me, or that you have any differences, that you may well experience rejection by those closest to you… because of me; the severity of that rejection most likely dependent upon the basis of the informed or uninformed information given at diagnosis.

It’s most likely that any rejection will be temporary, an initial denial of “us” if you like, by your parents out of their fear of the unknown, of me, treating your difference as either a fault on their part (they have failed), or as some kind of bereavement, which they will usually (hopefully) come to terms with quite quickly.

The less likely form of rejection however may be complete, due to them feeling they will never be able to cope with the difficulties that I will cause you/them/the family, resulting in “us” being put into somebody else’s care.

The most rare and severest form of rejection, unspeakable as it seems, is when a trusted guardian decides that “ours” isn’t a life worth living and therefore, rather than letting you live with me, resolves that it would be better to end the ‘suffering’ prematurely…

Although an extremely rare course of action, as we have seen all too recently this does still happen. And although such a warped decision can be based on a number of contributory factors - e.g. the mental health of the person concerned, their social & financial status - the major contributory factor will be the misinformation, fear and negativity that surrounds me and the life of somebody with an impairment! Misinformation that is supported and perpetuated by a media, a medical profession and a social structure that still regards impairment as failure, as abnormality, and therefore something that needs to be hidden, cured or eradicated!

This is the prejudice that we/you will encounter more and more as we develop, although hopefully it will decrease for each new generation. However I fear that the striving for perfection - for a world without impairment, without undesirable difference, without undesirables (with the benchmark for that continually changing and lessening) - will continue and therefore be the way that such a decrease is achieved.

And although you will undoubtedly face many obstacles constructed by society (as it is society that will ultimately disable us), whether they are peoples’ prejudiced attitudes, institutional discrimination or physical barriers, probably the biggest obstacle you will face (in terms of your impairment and your limitations), and the main focus of your anger and frustration, at the outset anyway, will be me.

It is true that because of me, because of the physical impairment and limitation that I will impose upon you, you will encounter episodes of severe frustration, anger and even hatred towards me (and by association yourself and your body, because of your perception of what I have done to you and to it). This is understandable. I accept this. But ultimately it is an exercise in futility. I say ultimately because we cannot be separated and therefore the limitations will remain. However, that frustration, that anger, will perversely be good for you in that it will help you overcome many of those limitations, often by forcing you to create alternative solutions. They say that necessity is the mother of invention, and you will test that saying to its limit. And if you can’t do something for yourself then you will need to recruit others to help you… That is something you will have to do early on and get used to it. Do not feel ashamed about this. The sooner you can get over any embarrassment the sooner you can get on with your life!

Also, it’s not to say that I do not need managing. Initially this task will fall upon your guardians but later it will be your responsibility. Stay healthy. Exercise your breathing… Singing is an excellent way of doing this. Stay upright and try to exercise. Physiotherapy is good but swimming is better… and more enjoyable. Try to continue to do what you are able to do on a regular basis, because there is the adage “use it or lose it” and this is definitely applicable where I am concerned. You will naturally lose some ability as you mature anyhow, due to your body growing whilst your muscle infrastructure effectively stays the same. However this shouldn’t necessarily affect your dexterity, although this can obviously be different for each of you.

The main way to stay healthy however is psychologically. As I have already said there will no doubt be times when you feel depressed, frustrated and angry because of your impairment, because of the limitations I have imposed upon you. Or because of the way that society disables you, making you feel that you don’t belong, or that you can’t participate or contribute equally because of the way it is constructed. These feelings can be more destructive to your health, your well-being than anything else… Dependent upon the way you deal with them.

Don’t allow yourself to think that you are inferior, second-class, because you are not! Although there are many groups and people in society that do believe this to be the case, and not necessarily in a hostile way (including many disabled people themselves), they do not constitute all of society! You are part of that society and therefore have every right to participate in it equally. So instead use any anger and frustration that you may feel to take (and fight for, which you will undoubtedly have to do) your place in that society. Try not to think or feel that you are inferior, and do not allow yourself to be treated in the same manner, and you will be pleasantly surprised how things will change for the better.

I am Spinal Muscular Atrophy type II. You may not want me being part of your life, but please don’t spend your life hating me or waiting for me to be eradicated… Because that might just be the biggest waste of your life.

* Not as in a conjoined twin, with the possibility of separation, but in that I will be intertwined in your DNA pretty much forever. There will be a seemingly relentless search for a way of ridding you of me, and although there will be the occasional supposed breakthrough for this goal along the way (thus allowing you to cast aside your “I’ve totally come to terms with this” blanket and once again feel the excitement of potential ‘normality’), please don’t spend your whole life waiting for the cure and hating me!

[fatdisabledbloke]

Cameron Must Go - The Song Lyrics

If you like the words then buy the song at http://www.fatdisabledbloke.talktalk.net/index.html and help get it to Number 1 for the General Election!

With proceeds going towards:

    - The Survivors Trust - Supporting Survivors of Rape & Sexual Abuse     - The Trussell Trust - Foodbank Project     - CALM - Male Suicide Prevention Charity 

CAMERON MUST GO

[Chorus]  Cameron must go, do you hear, do you hear,                 Yes Cameron must go, do you hear.                 Dave you have to go, but before we make it so,                 There’s some things that you should know,                 Do you hear, do you hear?                 Some things that you should know but will you hear?

You subsidise away, to your chums, to your chums, You subsidise away to your chums. You subsidise away, so no mansion tax they’ll pay, But spare rooms you take away, from those who need, those who need, And foodbank use it grows whilst fat cats feed!

               [Chorus]

The NHS you’ll sell, but it’s ours, but it’s ours, The NHS you’ll sell, but it’s ours, The NHS you’ll sell, and just like Royal Mail, Those who profit from the sale, will be your friends, be your friends, But Bevan's legacy we will defend!

              [Chorus]

The media you hold, in your hand, in your hand, The media you hold in your hand, You hold them in your hand, your bidding’s their command, To demonise the vulnerable and poor, your class war, But you underestimate how these mice roar!

              [Chorus]

To the victims you have vowed, no stone unturned, stone unturned, To the victims you have vowed no stone unturned, You vowed no stone unturned, but the dossier’s been burned, Its contents did you learn, too close to home, close to home? Westminster’s hidden shame too large a stone?

              [Chorus]

              [Instrumental Break]

With ATOS you should hang… your head in shame, head in shame, With ATOS you should hang your head in shame, You should hang your heads in shame, whilst recalling all the names, Of those in need, for whose own plight you blamed, yes you blamed, No longer here, because of fear and shame.

              [Chorus]

And when the nation it decides, you’ll be gone, you’ll be gone, When the nation it decides you will be gone, The nation will decide and no longer you’ll preside, And your successor woe betide they us ignore, they us ignore, The majority’s not silent anymore!

              [Chorus]