Would I be Writer?

Having a lot of free time on our hands, all of a sudden, can be quite a dangerous thing. In recent days I find my mind wandering into dark, shady corners that I would normally protect it from, and thoughts that can become all the more sinister when overshadowed by a global pandemic. These thoughts vary from day to day. Lately I’ve been giving much thought to my career choices. At first, these choices were both sensible and socially acceptable. I did a good Leaving Certificate and decided to study English Literature in Trinity College. In fourth year, i was presented with another choice: to throw myself into my studies and get a good degree, or to compile a portfolio impressive enough to earn a place on the MA Journalism course in DCU. I didn’t have the energy to do both to the standard I might have liked, and I wept for two days when I got the rejection letter from DCU.

Maybe writing’s not for me, I thought. Maybe it’s just a hobby. It would be too difficult to try and pursue a writing career.

So I applied for jobs. Many jobs. The rejection emails and letters piled up on my desk as I continued to send application after application. It wasn’t impairment related as I never disclosed my impairment on initial application forms. Being unemployed can leave one feeling unhinged. I just wanted something, anything. My prayers were answered when Offaly Centre for Independent Living offered me a job. A good job. If I played my cards right, a permanent job. I was so relieved. I did everything I could to hold onto my job. It took the birth of my daughter for me to realise how unhappy I was. I was a PRO, in charge of the monthly newsletter. I was writing lots of words, just not the words I wanted to write.

I stayed for seven years. I stayed because it was safe.  I stayed because despite being seemingly incapable and inadequate, I strongly believed in the philosophy of independent living. I stayed because I thought that no one else would take me with so little experience. These thoughts wreak havoc on one’s self-confidence and belief.

But underneath it all, I still wanted to be a writer. There was a major flaw in my aspirations, however: in order to achieve this, I was going to have to write. i was going to have to be interesting. I was going to have to be honest about some things, both with myself and others. When I survived a nervous breakdown in July 2014, I knew things had to change. I knew that I would have to take a risk and show my words to real, breathing people.

The blog – this blog you’re reading now – was only ever intended to be a temporary thing. It wasn’t supposed to be a disability blog, or a blog about activism – it was supposed to be my ticket away from all of those things. As time passed,  however, it became ever more apparent that those two parts of me – writing and activism – could not be separated. The urge to communicate the real message of Independent Living and equal rights swelled within my veins until the dams could hold no longer, bursting all over the keyboard. I began to despair at my lack of control. I wanted to be a writer, not “just” a disability writer. I fought the urges, and lost. An article about someone “bound” to a wheelchair, the perpetuation of a victim narrative that no self-respecting disabled person would consent to be a part of, would bring me back to the keyboard, typing in a fit of rage. I felt I had a duty to add to conversations that were about me yet exclusive of my voice.

I fell into a rabbit hole.

“Be careful of being pigeonholed. It could destroy your career before it starts,” I was warned.

“This disability stuff can get pretty heavy for a blog,” another person told me. Still, I couldn’t take their advice. An invisible magnet always drew me back to independent living and activism. Even now, that can get annoying, but I’m tired of fighting against writing what comes so natural to me.

As I mentioned earlier, lately I’ve been pondering the word “writer” and whether it really applies to me. I’m not a weekly columnist. I don’t have a published collection of poetry or stories. I’ve tried to write the same novel three times, with each attempt ending in me leading the character into a cul-de-sac so deep that metaphorical suicide seems to be the only way out. So have I really earned the lofty accolade of writer? I would be inclined to say, no.

My vision of being a writer was having the ability to sit at my desk and stare at the screen in awe of my own words. My vision involved churning out poem after poem, story after story, without a moment’s hesitation. It involved generous pay cheques and prestigious awards, but above all,  I thought being a writer meant feeling secure and confident in sending your precious darlings into the world. That there would be a point where I could produce a piece of work that I was happy with and confident with. I haven’t reached that point, because as I’ve learned with the support of writer friends and various online communities, that’s not what being a writer is.

Being a writer is in fact tortuous. Many fellow writers that I’ve had the privilege of speaking with over the last few months still struggle within the clutches of inadequacy, imposter syndrome and crippling self-depreciation. It seems that a lack of confidence, a fear of being exposed is par for the course when you are a writer. It also seems that a lack of self–belief as opposed to a lack of writing ability is a writer’s biggest enemy.

I write because I can’t not write. I write because when I’m not at the keyboard playing with words, the clouds in my head become heavy and dark. I write because I enjoy putting different combinations of words together. I enjoy trying to capture scenes, emotions, outer injustice and inner struggles.

And, more often than not, writing keeps me from lingering in those dark corners.

Infectious thoughts (Poem)

In the small corner of my office where I sit and hide, hoping words fall on my page,
I see the sun is shining from the confines of my cage.
I lift my weary arms to type, but don’t really see the use
When the world’s alight with chaos, the toll of many years’ abuse.
I try to write a story, to leave reality behind,
But deep inside I know there’s more sinister things on my mind.
Will I be around to see my daughter grow?
Will I see my friends and family again? Does my husband know
How much I love him?
And does it really matter?

It’s time to reflect on how God laughs at our plans
How we think we are superior
But yet this intense suffering was caused by man.
Did we ever have tomorrow?
It was never guaranteed.
Here is merely a reminder
Of what we really need.

We need love, hugs, and companionship,
A roof over our head,
Access to basic sanitation
To be warm, dressed and fed.
We don’t need the big house
Or to have two cars in the drive,
Not when the main goal is now
Simply to survive.

 

And if we are so privileged
To be here when it ends,
What will remain are memories
Of long chats with our friends.
But it’s dangerous to trivialise
And paint over all the cracks
When an even more insidious illness
Will no vaccine ever hack.

 

That voice inside our head –
The one that loses hope,
The one that says we’re better dead
And then hands you the rope.
That voice poses as a friend
But will not hush until you end
The voice, or your life –
I hope you find the energy to fight.

 

And if you feel overwhelmed
Take things day by day,
Allow yourself to shout and cry,
To feel anger and dismay.
Embrace the disappointment
Of all that won’t now be.
When will this be over?
We’ll have to wait and see.

 

And so I take this opportunity
To thank each and every friend
For their companionship, love and thoughtfulness
And I promise when this ends
Never again shall I take for granted
Your chats and your embraces,
But for now, try to keep a smile
Upon your worried faces.
Because fear is infectious too
It paralyses to the core.
We only ever had today:
It was true then, is true now, and will be the case evermore.

Mother Writer

Invisibly she sits
In the cocoon of her own home
Every day, alone
Churning out her little poems.
As a child she played writer
Imagining awards and trophies,
Never thinking for a second she’d
Be isolated and alone.

She looks outside her window
At the suits rushing to work,
Children on the bus
Wearing the garb of their school.
They all look the same,
And at first glance one couldn’t
Distinguish them by name.
The men in grey suits drive past
In their shiny, new cars –
Symbols of success –
They have made it far –
While she huddles into the safety
Of her oversized dressing gown;
She huddles into it so fiercely that
Within it she may drown.
She lowers her head into the robe
Hoping that they can’t see
And then her keyboard rages against the silence
Of perfect domesticity.

She lays the words before her,
Hesitant but proud,
The freedom to say these dangerous things
That she’d never say out loud.
But now, she feels pathetic –
She feels tired, and weak.
These words floating before her
Are not only hers,
But also belong to
Those who cannot speak.
She saves them in a Word file
Never to be seen
Far too dangerous to be unleashed –
People are far too mean.

What she shares is softer
Without the anger and the spite –
People take personally everything she writes.
They tell her she’s a natural
And should write for the paper
Ignoring that she has no time
For this publishing caper.

Because unfortunately, when day is spent
And the kids are tucked up in bed
She doesn’t have the energy
To wrestle within her head.
Instead she packs the lunches,
And closes her eyes to sleep.
These kids won’t stay young forever
And so, for now, these words can keep.

What do we want? A PA service! When do we want it? Now!

Ugh. I’ve been thinking lately about how many times I’ve been torn between pursuing other journalism opportunities and how often I end up just posting here instead. This blog is too accessible, too easy. Perhaps I should delete it, the culmination of five years’ solid work, publish it in book form, and charge extortionate amounts of money to people who want to read it. I give myself away, far too easily as a writer.

On the other hand – and I can’t believe I’m saying this – some things are more important than money. And there are some things money can’t buy. Freedom of choice, equal rights – those kind of things.

On Tuesday, 19 November 2019, an important motion is being brought to the Dáil. The motion proposes the legislation of a P.A. service. It’s safe to say that the majority of disabled people who currently use the service understand the rationale behind legislation. For too long, there has been a level of misperception that disabled people, in the words of Martin Naughton, are “to be cared for rather than cared about.” Since the onset of the recession, a culture has been created between those who care about the Independent Living Philosophy whereby it is often perceived to be “safer” to stay quiet and accept things, especially if people are afraid of losing the little provision they have.

Historically, independent living has never been approached as a “rights-based” issue in Ireland. The establishment of the Center for Independent Living in 1992 marked a monumental shift away from the charity model of disability to a rights-based approach. It celebrated the individuality of disabled people and their diverse lifestyle choices. However, as the demand for this revolutionary service grew, so too did the restrictions of it.

The HSE funds the Personal Assistant Service at present. However, significant investment is badly needed to enable people to live full, meaningful lives. Pauline Conroy, in her book entitled A Bit Different? Disability in Ireland notes that in 2017, forty-five percent of Leaders (service users) were only receiving a mere 45 minutes a day on average of Personal Assistance, largely for Personal Care. Many activists have been crying out for years for the need to create a fund exclusively for personal assistance. In our minds, “carers” tend to follow the “medical model”; disabled people are viewed either as “problematic” or as passive recipients of services, incapable of having their own voice or even of making the most basic decisions about their own lives. Whereas in the true definition of the Personal Assistant Service, the Leader is placed, as Martin Naughton once said, in the “driving seat” of their own lives.

The debate coming up next Tuesday is an important one. It won’t lead to all of us waking up on Wednesday morning in a world that has changed overnight, where we will all be able to access the level of assistance we need to live fully independently. At the very least, however, we will be creating a conversation about the need to approach Personal Assistance as a right, not as a lottery depending on your address. It’s about urging people to consider the importance of free will, of independence and choice.

If you would like to create awareness of independent living, or if you would like your local representative to debate this motion in the Dáil next Tuesday, please email me at sarahfitzgerald1984@gmail.com and I can send you an email template.

Finally, if I’ve kept your attention this far, you might be interested in this short story which details the reality of dependency and uncertainty for disabled people in Ireland.

 

(For more info on the #PASNow campaign, email me as above or visit Independent Living Movement Ireland’s website, ilmi.ie)

Budget 2020 (Poem)

In case you are wondering what triggered this  poem, there was no further investment into Personal Assistant Services in Budget 2020.

You want us to  be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.

See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now  we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.

And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.

Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.

The soft approach isn’t working,
and while I hate to curse
Your fucking lack  of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.

And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

Post Election Manifesto (Poem)

 

You knocked on our doors wearing a smile,
Said that you wanted to talk for a while,
Assured us that you understood our pain
and that in trusting in you, we had everything to gain.
Then as the door closed with us safe behind
Did we really remain in your minds?
Could you really know what our smiles were hiding
As your manifestos through our letterboxes you were sliding?

Black eyes by a fist who wanted to show who was boss;
An empty cot owned by a mother suffering a loss;
A child who didn’t have breakfast that day;
A young man who can’t make those voices go away;
A lonely but beautiful lady who can’t seem to stop drinking –
When you were ringing those doorbells
What were you thinking?
How were you going to gain our trust
In an Ireland viewed by many as cold and unjust?

You could promise the moon and the stars
But we won’t believe you’re not running up your tab at the bar.
While you attest that things will change in your name
for many of us our reality stays the same,
We still struggle to keep the roofs over our heads
(the lucky of us that is – spare a thought for those in hostel beds),
while working our fingers down to the bone
and spending our evenings feeling overwhelmed and alone.

And that – mo chara – is the biggest problem right there –
That people these days just don’t seem to care!
Young people in nursing homes, families with nothing to eat,
Thousands of people out on the street!
For a country obsessed with unity, all we do is divide –
Never has the gap between ‘rich’ and ‘poor’ been so wide.
And it’s so hard to believe that the country is broke
When the powers that be get six-figure paychecks
(unlike ordinary folk).

So if you are in government, and you’re reading this crap,
It’s time to stop letting Bertie and Enda take the rap,
The future of this country rests in your hands
And we’re counting on you to meet our demands.
Don’t say it’s impossible, that your hands are tied,
Instead think of the tears your people have cried.
One person can’t change the world, it’s true,
But if you speak up for the voiceless, others will too
And maybe, just maybe, our faith in Ireland will renew.

 

Poem: What is Mum?

(In honour of Maternal Mental Health Month)

What is mum but the clay and the moulds
Through which our whole worlds are shaped?
What is mum? The vessel in which
Her children she selflessly creates.
A mum should be gentle and loving,
Firm but understanding, strict yet kind.
Mum’s the one to which we all look to
For love, compassion and empathy to find.

What is mum but this irreplaceable angel
Who seems to be able to juggle it all?
Who rarely seems to get angry or sad
Who loves her children, warts and all?
She carries out her motherly duties,
Her small smile positioned for all to see –
There are always haters and begrudgers
Itching to unveil the real bitch she can be.

What is mum on our island of Ireland,
Where she is no longer shackled to the sink
and yet she cannot find a high-paying job
to make the costs of childcare considerably shrink.
And yet if she chooses to stay home with the sprogs
she’s accused of arsing around –
But how much of their little lives will she miss in the office?
No matter how she tries, she never finds that middle ground.

What is mum but the smelly worn out old sponge
Incapable of holding back her tears any longer?
The woman who beats herself up for all her mistakes
And wishes she could be that little bit stronger?
The woman who worries, overanalyses and criticises
Not knowing that she’s actually great –
She pushes down the hurt, blocks out the voices
That constantly serve to mock and berate.

You see, mums are incredible
But, alas, they’re mere humans too,
And believe me, they are drowning in their own expectations
So they certainly don’t need more added by you.
Every mother out there who loves their kids
Is undoubtedly doing her best,
So with that in mind, leave callousness behind
and let’s give this whole judgemental lark a rest.

Because mothers will never be perfect
(as much as this pains me to say)
but how they perform in their duties
will be down to society at the end of the day.
So let’s not put mums on a pedestal
Where they will feel isolated and alone –
And instead listen, encourage, support and love each other
Whether it’s over coffee, WhatsApp or a natter on the phone.

What is mum?
Only what we allow
Mum to become.

Ten Years On

 

Ten years on,
and how should I feel
other than numb,
Dumb
Lost for words?
I remember that day
It prickles the soul –
The ringing of an office phone
The air was as grey as a gravestone.
A vital organ
Viciously removed
Left me gasping for air.
It didn’t seem fair –
Sure hadn’t we just spoken
A few days before?
It couldn’t be right
And try as I might
I just couldn’t believe
You were
Dead –
Taken by the angels, they said
As this somehow made it okay
That you wouldn’t awaken to see the next day.

Ten years on, and my heart still stops
When Carly Simon is piping through the shops.
A whiff of Samsara, the taste of a good stew
Deceives my mind into looking for you.
and I know after ten years things tend to look rosy
when in fact we both know that things weren’t always cosy
Between us. But I have learned
to abandon that baggage in the lost and found –
It can get very heavy carrying it around.

Ten years on
And I struggle with survivor’s guilt and what-ifs
The empty chair in the corner of my eye
As I slipped on the gold ring
and cooed over the bassinet.
You left when I wanted more:
one more day, one more meal, one more moment.
The anger reverberated through my bones
Resenting you seemed the easiest option
(the right thing is never the easy thing).

Ten years on, and sorrow visits automatically
Like a summer tourist on a return booking.
And I don’t want to feel anything.
My bruised heart clams up, recovering
From past wounds. Time heals
and steals
precious moments.
You are the archetypal mother-in-law,
the doting nana,
The headcase ringing me ten times a day with trivial gossip.
That remains.
Light barges through the fog,
And I hurt:
I remember.

And ten years on
I realise
You can’t be dead
If, within my soul,
You have survived.

Silent voices (poem)

My heart is heavy, my head’s in a spin
As I try to make sense of this mess that we’re in.
Keep quiet you fool, says the voice I tend to ignore,
You’re turning into the most insufferable bore.
Droning on about rights, injustice and division
And how we still aspire to true independent living.

My high-pitched female voice grates on the ears
Of the suited pen pushers who never seem to hear,
and they even seem to relish the thought of those living in fear –
of the voices they’ve silenced down through the years.
And I wonder how long we can keep up the fight
When some of us are forced to end the day at eight at night,
And we know better than to dare to bite
The hand that feeds us.
We are so fucking grateful,
And like stupid obedient pups we will always be faithful
For the reward of the paltry scraps thrown in our direction.
While the powers that be rule our lives at their discretion.

Sometimes I think I go over the top,
And I wish I could get my racing mind to stop.
I wish I didn’t care about fairness, equality or rights
and that I didn’t feel pain in my heart day and night.
If I didn’t know better, I could live in a cloud
Where the voices in my heart wouldn’t sound so loud –
Just become a ‘yes man’ and simply nod my head
And turn off the brain that is now a mangled mess instead.

And on the worst days, when I’m exhausted through and through
I’m so tempted to shrug my shoulders and say “What can I do?”
Do my words make a difference to anything except my bruised ego,
And if we want people to listen, where should we go?
Had I known that gaining more knowledge would bring so much pain
Would I choose the same path had I my time again?

YES, YES, YES

I say yes to equality, for the right to my own mind,
To leaving the shackles of the past behind,
I say yes to being ‘the troublemaker’ who says what can’t be said,
I shout on behalf of those imprisoned in their bed.
I fear complacency and apathy, of accepting as the norm
The nitty-gritty of my life fitting on an A4 form.

My heavy heart’s on fire, my head spins with voices from the past
That say: If you want to change these things, you’d better act, and fast.
 

Poem: Proud

                                                                Proud

Nine years of birthdays with no candles on a cake,
Watching seasons come and go,
The days dragged, but the years flew.
And here I sit once again, with no gifts, no smiles, no hugs
and nothing new to say,
Unless you count saying ‘I miss you’
in a completely different way.

But this year, as well as the usual
Memories that make me smile,
My mind wanders to the fact
We haven’t spoken in a while.
and I need some validation,
to hear you say the answers out loud:
What do you think of me,
Do I make you proud?

I know that when I share this poem
People will say ‘of course!
How could you ever think otherwise?’
And they’ll say it ‘til they’re hoarse.
But you know I’m a cynic –
I never believe until I see –
And to be honest, the fact I’ll never know
Has really been bothering me.

Because I know I wasn’t easy:
At times, I had to be pushed,
Sometimes I was lazy,
And others, far too rushed.
I remember you there goading me,
Telling me to do my best,
and as I got older
Begging me to take some rest.

Then I look at my daughter,
Your grandchild, brave and strong,
and I realise, for all my mistakes,
She’s the one thing I didn’t get wrong.
And when she looks into my eyes
and says ‘Mum, are you proud of me?’
I realise that the answer
Will ever only one thing be.

And this brings some consolation
at this desolate time of year,
A hope that you’re looking down on me
With a smile from ear to ear.
Because though I cannot know for sure
Or hear it said out loud,
I hope you know I try my best,
and I hope that you are proud.

Happy birthday xxx