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Disability, Illness and Fundamentalism

Disability, Illness and Fundamentalism

My brother died of Cystic Fibrosis, 
When I was twelve and he fourteen, 
It took away his ambitions, 
To study at Oxford - the pipe organ’s steam. 

I understand being born with a genetic disorder, 
Because I have Cerebral Palsy and sometimes mused, 
Upon when researches will similarly classify, 
The failure of muscles which neuronal circuits use.

I was born with a condition, 
And so knew James was likewise endowed; 
I didn't know why my dad, an MD, 
Did not suspect his son’s cloud. 

I wrenched that it was my dad’s old age, 
That prohibited him for from making a diagnosis, 
But deep down I knew that he was immoral, 
For not offering a prognosis. 

So I related to James very well, 
And we talked about ‘male’ things:  
Cars, Spitfires, planes, and inventions, 
Because I was a tomboy with wings. 

We also discussed politics, 
World history, philosophy, science and maths, 
But at the end of each discussion, 
He made out to mum that we were just having a laugh! 

Our parents were fundamentalist Christians, 
Full of woe at non-religious activities, 
And believed that the soul supported mind and body, 
In harmoniously pounding entities.  

Neither did he say that he cared for me, 
In the toilet or with my jumper, 
Which he sometimes would put back on me, 
Before we were seen by “Mother Thunder.” 

He was just like them as he loved the Bible, 
So I allowed him to thus develop;  
In the church with his piano, 
The congregation to envelop. 

My knowledge of his illness, 
Was validated at school, special and disabled, 
Where there were others with CF,  
Who also had fingernails turned inward. 

Indeed I may have complained to my school, 
About the deprival of his life-span maximisation, 
But they continued to patronise me, 
For my self-care hesitation. 

It was only once James was diagnosed, 
That they took me seriously and ‘kent’, 
But by that time I was entangled, 
In a web of divine intervention for a CF relent. 

They thought God would cure him, 
Completely and entirely of CF, 
But I always knew their insanity, 
Would end in them being ‘cognitive deafs’. 

Latterly of course they prayed, 
That God would save him from death as well; 
And so I often questioned educators, 
Who forbode my slowness accusation to sell. 

After he died they produced a book, 
And called it Goodnight James, 
Which upset me and found me distraught, 
Because their own faith it blames! 

It seems to say that if you ask nicely of God,
In a way and in a certain manner, 
That Jesus will heal the sufferer’s body, 
So as to create a holy clangor.

I am disabled, entitled to the health service, 
And would not like to promote divinity, 
As a pathway to make anyone better, 
Even if it allow conceptual modal validity.

Studied marketing, hate the book Goodnight James, 
Because it plasters God as real, 
As potentially effective as a doctor, 
When He just ramifies what you feel. 

NHS doctors are real to me, 
Because hey helped my brother get better, 
Fight bacteria and mucus build-up, 
With operations and drugs - ‘bread-and-butter’. 

There is no God, 
And he’s certainly got nothing to do with the NHS, 
In any way whatsoever! 
Because that would make a great big mess! 

The NHS is not attached to divinity, 
Dependent on it at all, 
Not a sidekick or an offspring, 
Not a development from God, a call. 

It’s not above God, 
Beside him or below, 
Not secondary, 
Nor a third party to know. 

The NHS is not an agent of the divine one, 
And it is not an agent of earthly representatives, 
It’s not assigned to Jesus for productivity,
And in medical need, God is not active. 

It is the mind of the doctor which I so love, 
Astute, intelligent, insightful and aware, 
Of the patients’ incapacity’s, 
Giving life, functionality and care. 

I don't know why my parents wrote the book, 
To chide those who ignore, 
The celestial being in medical journeys, 
Making the patient into an ignorant whore. 

See, there are not three people in the doctor’s room, 
There’s only two, you and her or him, 
God is not invisibly interacting, 
In that beauteous dialogue - the win. 

Although I understand faith can be expressed, 
In many ways, boldly or with timidity, 
I likewise have the right to my opinion, 
Of who to trust in life’s tepidity. 

To sacrifice one’s mind for a delusion, 
When the actual means a nurse or doctor, 
Is an extremely saddening experience, 
For the relatives who know people so much more. 

Obviously, private devotions are personal, 
Not affecting anybody else, 
But what they did changed hearts, 
Towards God, and not towards the NHS. 

Fundamentalists in the 80s so needed to know, 
How to fit in to their brave new society, 
Where new technology, disability rights and medical advances, 
Gave church leaders a certain amount of sobriety. 

The book could’ve described James’ love for me, 
And that would have explained disability at least, 
But what transpired was a religious projectile -
A holy cry of an introspective fundamentalist feast! 

I explained life and death to James, 
How to cope and why we get ill and suffer,  
He was more at ease after we had talked, 
More interactive, chatty, and calmer. 

You can only validate what you know is true, 
And I know to hope in the health service, 
To glorify, praise and advocate its methods, 
So as to help others enjoy a human presence. 

People’s lives will only improve, 
When individuals make it better, 
Societal progress is wrought by the ones, 
Who’s convictions become actions and words, letter. 

So I did not help market the book, 
In any way at university, 
And I don't know if my parents understood, 
Their slighting by my apparent adversity. 

I have my own memory of James, 
His fondness, deviation and complexity, 
So I hope that you will understand, 
The real story of his personality. 

Go to the doctor when you are ill, 
Don’t request divine healing, 
Because your confidence will be much greater,
When you rest in people’s love, in their caring. 

Copyright © Rhoda Monihan

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