I know what I want – and I want it now!

Today is a mucky, awful day. It’s been leaking all morning, and probably will be for the rest of the week, according to forecasts. Nonetheless, I’ve been out of the house. My Personal Assistant and I have already been to the gym today, which not only helps me keep fit but also ensures that a hermit writer such as my good self does not become institutionalised within my four walls. Such a normal, mundane thing, isn’t it, going to the gym? Some dedicated people (read nutcases) even make time to go at six or seven in the morning before work. Often, if I go slightly later in the day (early afternoon) I meet other mums sweating it out before the kids barge in from school.

How wonderful it is to have that choice – to come and go as you please. To go to the gym, or to sit in a café salivating at a large chocolate éclair. To go to bed early and read, or to stay up until 4am watching the latest series on Netflix. The great thing about life is that it is full of choices. We make choices every day – mundane ones like what to have for dinner, and exciting ones like going travelling in Australia(!) – and many of us never give them a second thought.  And hell, why would we? Life is for living, right? We’re going to be dead long enough, aren’t we?

I have not been feeling too good in myself lately (hence all the extra exercise – it boosts my mood) because I know what I want. I want to be a writer, and even though I’ve spent hours this week applying for other jobs, I know that writing is the only profession that makes me feel whole, competent and useful. I love it because it’s a skill that can constantly be worked on, improved upon and polished. However it is so hard to focus solely on writing when I know that disabled people are collectively still fighting for the right to do what they want. And often these things do not include something as ambitious as going to Australia. I’ve heard people comment on how nice it would be to go for coffee once a week with friends, maybe go away for a night or two, breathe in new surroundings. We as a family often go for day trips, a drive somewhere, a change of scenery. It’s a must for your mental health!

During times when I myself feel low and inadequate, my mind wanders to those who don’t even choose what times they get out of bed, who can’t spontaneously decide to have a shower that morning, let alone leave the house to do their own shopping or socialise. If this was my reality, I can only imagine that my thoughts would be very dark indeed. To me, this isn’t living – it’s merely existing. And how many people in Ireland are  merely existing?

I heard someone recently say that they were grateful for the services they receive. And hey, there’s nothing wrong with a bit of gratitude, eh? After all, as a parent I have instilled in my daughter that we should always be grateful for what we have, that we should always be polite and say please and thank you. I am guilty of being grateful. I am especially grateful to my Personal Assistants for the work they do in helping me be independent. In fact I am so grateful that if my service were to be cut in the morning, that I would probably say something like “well there are people out there who need it more than I do, and sure can’t I manage, and I can still get taxis and buses and stuff”. Firstly, if I didn’t have a Personal Assistant, I guarantee that I would not have the energy to write rambling blogs such as this one. Secondly, my attitude of comparing my own needs to the needs of others perpetuates ableism and creates a hierarchy of disability. Instead of using the PA Service to achieve equality, it seems that those who “need” it more, such as those who need help with personal care, are prioritised. And logically, there is nothing wrong with this. However, this perception, exacerbated by the constant talk of lack of finances since 2008, has led disabled people themselves to lower their own expectations. And talking out is dangerous because if you are perceived to be a bit of an upstart, you risk having whatever little you have being removed from you.

This is the reality within a country that does not yet recognise Personal Assistance as a right. The right to a Personal Assistant so that a disabled person can live in whatever way they choose is currently not recognised in Irish law. Now that we have ratified this famous UN Convention on the Rights of People with Disabilities (UNCRPD) that I have harped on about more than once, the absence of legislation protecting our right to access Personal Assistance is no longer acceptable. Oh, and just to clarify, home help and Personal Assistance are separate services according to Article 19, so having access to one does not justify the denial of access to the other. In case you don’t believe me, I quote directly: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” (UNCRPD, emphasis mine).

A year ago, I had the absolute honour of being co-opted onto the board of an organisation called Center for Independent Living Carmichael House. Last September, we rebranded as Independent Living Movement Ireland  (ILMI). Today, ILMI launched a booklet entitled “Achieving a Right to Personal Assistance in Ireland” in collaboration with the forward-thinking Centre of Disability Law and Policy in NUI Galway, as part of their Disability Legal Information Clinic. It is a positive step towards creating an Ireland that eradicates the notion of disabled person as a medical “patient” and moves instead towards recognising Personal Assistance as a social issue and a basic human right. It fills me with hope that perceptions will change, sooner rather than later.

I want my right to Independent Living to be recognised. Before I die would be brilliant. Then I can focus on living my best life, whatever that may be.

For more information on the vital work of ILMI, or to join our  #PASNow campaign, please visit http://www.ilmi.ie.

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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.