Author: Julie Newcombe

I wrote this in the early hours of this morning in a fog of anger at the lack of justice for Joanna Bailey and Thomas Rawnsley at their inquests this week. The courts may not have reflected the truth of the events leading up to their deaths, but many of us know that there is another justice.

There is another justice,
It’s the justice of the heart,
When we know what’s surely right
Despite the verdicts they impart.

When the system’s stacked against us,
When they always twist the truth,
When the only thing that’s perfect
Is the stolen breath of youth.

These relentless waves of egos,
Of self interest and bile
Seem to win the day each time
And our memories defile.

So we shout the names of those
Whose unsullied souls remain
For the easy life of others
Who would profit from their pain.

And we will not stop shouting,
Shout their names a million times
Til the laws that shame are broken
And another justice shines.

A poem about the fear and anguish felt by the parents of autistic people and people with learning disabilities locked up in psychiatric hospitals during Covid 19. You can listen to the poem in this video or read it below.

https://youtu.be/5hBO5–_eLs

Unshielded

Did they hold down my lost child today?
Did they torture his limbs, tear already bruised skin?
Did they drug him and shut him away?
Let him sleep on the floor where the blood stains the walls?
Did they shatter his spirit today?

I so wish that they’d call me to say
That they did set him free, that they gave him his tea.
But they say that I get in the way,
‘Now Mum, don’t make a fuss and just leave it to us.”
They can hide all their failings that way.

Seems these times give the perfect excuse
And the reasons I’ve heard border on the absurd.
Something they’ll never write in reviews
Is tormentors abuse when they’ve nothing to lose
And we’ve let all the closed cultures loose.

So who pays for the rights we have lost?
I just can’t comprehend all that money they spend
And there’s always a far greater cost.
With their backs to the wall, there’s no comeback at all.
Who will pay for the lines they have crossed?

And when everything’s finished and done,
Seeing nothing was gained, only trauma remains.
It’s a battle they think they have won
Leaving people bereft in the pieces they’ve left
And a mother who cradles her son.

So whose voice might be my voice?
Who got right inside my head?
And just who is making my choice?
Did they hear what I have said?

This role that they are playing
And their world view override
All the things that I am saying
And my voice will be denied.

And when I reclaim my voice,
When I’m shouting in the void,
Does it all just seem like white noise?
Do they say I’m paranoid?

The powers that be ignore me
When they meet behind closed doors,
Then they try to reassure me
Whilst they’re pointing out my flaws.

These endless fake discussions
Where my voice is never heard,
Have no point, no repercussions
And reality is blurred.

So many ways of hearing
What a person needs to say.
When your ego’s disappearing
You might find a better way.

To those who say they knew it,
That we’re seeking unwise things.
Maybe flip the way you view it.
It’s all roundabouts and swings.

I was asked to write a poem to mark the launch of NHS England’s ‘Ask Listen Do’ initiative. In the words of the Ask Listen Do team…

“Ask Listen Do supports organisations to learn from and improve the experiences of people with a learning disability, autism or both, their families and carers when giving feedback, raising a concern or making a complaint. It also makes it easier for people, families and paid carers to give feedback, raise concerns and complain.“

Being a little cynical as a result of our own experiences within the system, I came up with this poem. However, I do know that there are some very good people trying to make a difference at NHSE. Maybe not quite enough, but definitely some.

If you fancy having a listen and watching the video, follow the link and turn your speakers on…or read the poem below.

https://youtu.be/SMios-a11f0

Ask, listen, don’t be the physician
Who thought he knew better than mum ever could.
For he left her with tears that won’t dry through the years
And he sent her boy home in a coffin of wood.

Ask, listen, don’t be the commissioner
Who moved a girl miles from her family home.
Was it better than giving community living
So she silently weeps in her bed all alone?

Ask, listen, don’t be the closed council
Who held secret meetings we couldn’t attend.
When your Friday night emails lack accurate details,
There are bridges of trust that will just never mend.

Ask, listen, don’t be the headteacher
Who sent a child home when he didn’t fit in.
For the lesson to teach is we’re all within reach
And to celebrate difference and talent within.

Ask, listen, don’t be the professional
Who spoke all the jargon but didn’t relate.
When your sympathy’s small, you’re worth nothing at all.
In the end what you offer’s too little, too late.

Ask, listen, don’t be the provider
Who took all the cash but had nothing to give.
Relentless abusers of your ‘service users’,
All those people forgotten, their lives never lived.

Ask, listen, don’t hide from the problem
For that’s when the problem is probably you.
Forget isolation and start conversations
As you take up the banner of ‘Ask Listen Do’.

My mum’s passing is always on my mind. She struggled with mental illness all her life. It was a pretty cruel blow for someone so talented in so many ways. Yet such is life.

These tears have blurred my words with endless flow,
Yet still I write for she would want it so.
And, holding tight the love she left behind,
I write about the radiance of her mind.

Her mind was sparks and shadows unsurpassed,
Defiant, bold and brazen to the last,
A sunbeam dancing gaily come the dawn,
With fairy footsteps welcoming the morn.

Tho I, with shining tears, its touch beseech,
Its tantalising dance is out of reach,
Ethereal yet with summer’s fire ablaze
And brilliant in a million different ways.

This worldly place is bound by lesser chains.
Suspicion, anger, hatred are its bane
And those with different minds are seldom heard,
Just voices in the darkness of the earth.

When people’s talk with scornful words is rife,
This drift of ifs and maybes that is life
Is far removed from all that makes it true
And hope will vanish with the morning dew.

So cast off all the chains of sanity,
Embrace the madness, let the magic be.
And whisper to that ever earthly crowd,
“Good people, let’s go dancing on a cloud.”

Ten years has no meaning when you have been locked far away.
Ten years can be next week or it can be just yesterday.
It can be a lifetime or maybe a life that was lost.
A dream or a memory, the depths of the ultimate cost.
In these conversations, whatever you think you might do,
Know that these are people and they are depending on you.

I can’t bear thinking of anything broken,
Crumpled by fear, how it fills me with loathing.
Life must be perfect and honest and open,
All in straight lines, never angled or sloping.
Why try to touch me with words with no meaning?
Actions dictate all the truths you are screening.
You cannot fix me so why must you taunt me?
Must your opinions continue to haunt me?
Think I will sleep with my dreams that fly higher,
You remain flawed and adrift in the fire.

Why are so many autistic folk or folk with learning disabilities still stuck in psychiatric hospitals? Wasn’t it all suppose to change after Winterbourne View? Weren’t we supposed to be stopping all the abuse and giving people fulfilling lives in the community?

Apparently not…

Watch the video here or read the poem below:

https://youtu.be/5ovME3Gb6iY

We can have a meeting, a conference,
It might sound like nonsense,
But we will be sparing no expense,
We can talk about it all day long.

We can have a workshop, a session,
Delightful, (depression).
And we’ll make such progress, (regression).
We can talk about it all day long.

We can set the agenda and devise some strategies,
Conjure up statistics, form a few committees.
Policies and projects,
Blueprints for success,
How did this end up as such a mess?

We can have a panel, a forum,
A council, a quorum.
And we’ll do our utmost to bore ‘em,
We can talk about it all day long

We can have a tea break with tea cakes,
With backslaps and handshakes,
But we’ll never mention our mistakes.
We can talk about it all day long.

There are people behind this, but they’re people we don’t see.
Well, why would be bother? We are much too busy.
Speak a whole new language,
No one can relate
Guess we’ll have to leave them to their fate.

We can have a board with a budget,
We might have to fudge it,
But there will be no one to judge it.
We can talk about it all day long.

We can have a plan and conclusions,
With actions, delusions.
Causing such a state of confusion.
We can talk about it all day long.

Probably where it’s all gone wrong
Talked about it all day long.

Kneeling in a pool of trembling torture,
Stricken on a floor she cannot feel,
Sobbing for the broken child within her,
Bleeding from a scar she cannot heal.

Looking at herself from somewhere, elsewhere,
Fearing each beginning is an end,
Angry in an single searing moment,
Smashing treasured bonds she’ll never mend.

Pacing futile steps with thoughts that trip her,
Sleepless with a dark and friendless sky,
Worthless child, condemned by her abusers,
Whispers to the mirror, “Who am I?”

She is just the cut or burn or stab wound,
Swallowed pills or clenched fist on a wall,
Where she starts or ends lost in confusion,
Maybe she’s not really there at all.

They never take the simple way,
A board game ruled by jargon is the game they like to play.
And they can play the game all day
While people they deem worthless waste their vital hours away.
I’ll never understand the things they do,
But honestly right now for me and you
It’s like humanity plays catch up with its sanity;
I’m drowning in a sea of words.

Can someone find a way that’s true
When people do the things they keep on saying they will do?
Excuses only pave the way
For tokens that are worthless in the glaring light of day.
For if you want some meaning for your creed,
You need to turn the talking into deeds.
And when their power games replace the power of people’s names,
I’m drowning in a sea of words.

So why do I sit here and write?
I’ve spent so many moments in a crazy, burnt out fight.
It’s really not a lot to ask
For those who grab the cash to do the jobs that they’ve been tasked.
But bagging bucks is easier it seems
Than making sure they nurture people’s dreams.
When an identity is classed as a nonentity,
I’m drowning in a sea of words.

But this is not a cause I’ll leave,
You sometimes have to fight for things you’ve chosen to believe.
And I would say the same to you
Is this the kind of world you’d leave your wide-eyed children to?
I haven’t all the answers here and now,
But answers can’t explain the why and how
Until a different voice can give the world a better choice
And life is not beyond absurd.
I’m drowning in a sea of words.