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Silent Footsteps

I’ve been trying to get out  of the house more lately. It’s good for my mood and my mental health. Luckily, Tullamore town park is only around the corner from us so on Friday evening, Alison and I walked down, as we often do. I had read in the paper that there was to be a gathering that evening for families who had lost loved ones to suicide, and that those affected had been invited to bring a pair of shoes with them to represent those who had died so tragically. Thinking it’d be a tiny affair (Tullamore is no city) we bought a pair of runners to represent my childhood neighbour Paul and another childhood friend, Frank. When we arrived at the park, I was taken aback by the depressingly sizable crowd in front of us. I had explained to Alison that we were honouring those who had died.

“Like my nannies?” she’d asked. (She loves hearing about her nannies).

“Er, not exactly,” I replied.  What the hell was I doing, bringing a child to this event? “We’re remembering people who died because they were just tired of life. There’s sickness of the body, and sickness of the mind. Sometimes your mind gets so sick that it believes it can’t get better… and sometimes it kills people.”

I reflected upon my pathetic explanation. Don’t explanations like mine only serve to perpetuate the problem, that we have become so ashamed to vocalise our feelings that sometimes we just… don’t? We don’t want to be a burden, so we spend day after day alone, saying nothing to anybody. We worry that we won’t be believed. Or we keep quiet because we know Mrs So-and-so is going through their own shit and she has it way worse. Whoever coined the phrase “first-world problems” should be shot.

As I listened to the prayers, my eye wandered to the line of shoes in front of me. The line was so long that I couldn’t see the end of it. That frightened me. These shoes belonged to people in our town – ordinary people with ordinary lives – who were living with a massive gap in their lives. Suddenly, I became overwhelmed with an emotion that almost suffocated me. It was sadness, mixed with pain and self-hatred. Suddenly I realised why I had subconsciously wanted to be there, even though I wasn’t representing an immediate family member.

I was representing… me.

It’s almost been five years since I had deep, suicidal thoughts. Five years since I took a handful of pills, despising my own cowardice when I couldn’t bring myself to take enough to kill myself. Five years since the night when I told my husband I didn’t love him and wouldn’t he be better off without me and didn’t Ali deserve better. Five years since I bashed and cut every inch of myself in a bout of self-hatred so inexplicable that I can’t explain it accurately now that I am calm. In my eyes, I had failed. I was a crap parent, and shite at my job. I felt constantly tired, even though “I only had one child”.  Some people couldn’t even have children and here I was acting like an unbelievable knob, ungrateful for what I had. All I had wanted was to be dead.

And sitting there, looking at the shoes, part of the reason why suddenly occurred to me. We have distanced ourselves from each other. The cost of living is ridiculous, so in an average household both partners must work, often ludicrous hours. Where is the time to have a meaningless natter with your neighbours? And speaking of neighbours, we don’t know our neighbours anymore (stupid housing crisis). We keep ourselves to ourselves. My parents bought a house back in the ‘eighties and that was our forever home, but people can’t do that anymore. And we knew most of our neighbours; in fact, all of us kids had best friends who were also our neighbours. People are not able to put down roots: not those in houses where the rents are constantly climbing, and certainly not those in hostels or hotel rooms.

I began thinking: if things are so bad (and make no mistake – we are beyond crisis point here) then why are we too proud to reach out to each other? Why are we wasting time trying to  pretend we have the perfect lives on social media when we need to be talking more, empathising more, encouraging each other more? When will we learn that the perfect life we aspire to has been airbrushed into existence, and that happiness is more important than perfection? And why, in spite of the “It’s ok to be not oks” and “mental health is real healths” are we still not taking it seriously?

I resolve to take mental health more seriously because those empty shoes frighten me. So let’s go for coffee. Come over for dinner, or chocolate – or both. If you ever need to chat, I will not judge. I will listen as best as I can.

Don’t assume that what you left unsaid will be heard. Trust me, people will be glad you said it.

It’s those unsaid words that haunt us the most in the silence.

 

 

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.

 

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.

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.

A Little Help

Dear whoever has the pleasure of reading this right now: forgive me for I have sinned; it has been almost two months since my last blog post. When I started college, I envisioned having more time to regale you all with trivial tales of my little life but being ever self-pushy and, well…me, that hasn’t happened. However I need to get this off my chest, otherwise I may implode.

I feel like I am living in a nightmare where everyone else is asleep but I am wide awake. I am slowly suffocating and there seems to be nothing I can do about it. Being in college for the last few months has confirmed to me that I live within a culture that constructs disability as a problem, that encourages us to blame ourselves for our shortcomings to deflect from the fact that we are oppressed and becoming increasingly voiceless.

Do you think I’ve lost the plot? I think so too.

For college, I decided to do my research essay on Independent Living in Ireland. May I say I wish I’d done it on something else, something I couldn’t give a crap about, because the more I read, the angrier I become. Sometimes I wonder would life be much easier if I didn’t know anything about the reality of Independent Living in Ireland. I wish I could shrug my shoulders, say ‘ah well, that’s just the way it is’.

But I can’t, so here I am.

Reader, I want you to think of your life as it is right now. Maybe you’re a student who studies hard during the week and parties harder at weekends. Perhaps you have the career you always dreamed of, one that brings you all over the world. You could be the proud parent of eight beautiful kids, secretly loving the chaos. Or maybe you’re a bit of a Lothario, with a different partner on your arm every ten minutes. It takes all sorts to  make this world. People with different views, dreams, outlooks, opinions. Everyone is different; that’s what makes us so interesting.

Now, imagine you only had control over your  life for forty-five minutes a day. Yup, forty-five minutes. Imagine you were the CEO of a multi-million euro company. How would you fly around the world to all your important meetings? Imagine you were a fun-loving, party-animal college student who had to go to bed at eight o’clock in the evening and get up at eight o’clock,  no exceptions.  Imagine being fully corpus mentis and expected to put up with an ‘expert’ who doesn’t know anything about you or your life making major decisions about how often you go to the toilet, how often you shower, what you can eat for your dinner.

Welcome to being disabled and needing assistance in 2019, and it’s like a parallel universe. Often it’s like looking at the world from inside a glass bubble, but not quite being able to reach it. It can get lonely in there, and suffocating. And no-one dares break that glass bubble in case someone gets hurt. It’s a world of risk assessments, of the professionals in the white coats, trying in vain to convince people that they truly believe in empowerment and equality. Oh, you can be empowered, so long as these experts are given the power to empower you. They will decide how much assistance you need based on some ticked boxes on a long form. If you have pride, this exercise will be particularly painful. Nobody likes to admit that they can’t do things by themselves. Isn’t the measure of a man/woman the ability to do things by himself/herself?

It’s best to be as compliant and agreeable as possible. No-one likes a troublemaker. And it’s not as though you making a stink is going to make any difference. Everyone knows what happened when Winston Smith from 1984 questioned the system. The system broke him, and in the end he was just grateful that Big Brother had saved his life, even though it was this system that made his life unbearable in the first place.

I fear I’m not making this point very well – Independent Living and freedom of choice is not a disability issue. It is a human rights issue, and one that effects every single one of us. How, you might ask. I don’t believe that ‘non-disabled’ people should support the disability movement just in case they become disabled one day, though I respect people who do have this mindset. I believe that if you don’t believe that the lives of disabled people are worth investing in, if you don’t quite think that every one of us, regardless of impairment, has something to offer, then you are perpetuating an idea of “them” and “us”.

I have postponed penning this blog for about a month now. I didn’t want to upset anyone. I don’t want to appear ungrateful for what I have. Then, this evening, I wondered how many people feel the same way I do, and are also afraid to say anything? How many of you out there are tired of fighting the system? How many of you have become apathetic because it’s really only a myth that the little people can win?

Apologies to those with screenreaders for the shouting here, but –  THESE ARE OUR LIVES.

We only get one life. Are we going to spend the rest of ours being told what to do, waiting to see who arrives to get us up out of bed? We don’t want to be taken care of, we want to be empowered, enabled! We are only going to live once so let’s fight for the things that really matter. Going for that cuppa and getting the cream bun that’s bad for us. Going clubbing and getting so roaring drunk that you end up with your head in the toilet at the end of the night. Taking that job in Dublin that you’ve always wanted. And above all, having the control and the assistance needed, as decided by you, to do those things that all of us should be taking for granted.

Until this is a reality, I don’t think we can afford to be complacent. After all, everyone needs a little help sometimes.

 

Shameless plug: Independent Living Movement Ireland are running a #PASNow Campaign, which calls for the definition and legislation of Personal Assistance. Achieving this would help bring Ireland in line with the UN Convention on the Rights of People with Disabilities. If you are interested, please visit http://www.ilmi.ie.

 

 

 

 

 

 

 

 

 

 

 

Healing Heart

It was late October when I got a call from a fellow activist. Now I have a rule that when someone from our diverse disability community asks for help, I try to accommodate where possible. This lady was ringing me because she was due to give a talk on disabled parenting the next day, but she had other commitments she’d forgotten about. Luckily, I had none scheduled. She was to give a talk to medical students in UCD.

“I’ve nothing prepared,” I said in a panic.

“You’ll be fine,” she replied. “Just wing it, be grand.”

And so against my better judgement, with no notes with me whatsoever, I found myself on the train to Dublin the next morning. I love the train; often it’s the only solitude I get when I spend most of every other day studying, writing or parenting. However, this time I could hear my own thoughts, and I didn’t like them. How come, almost seven years later, I still felt like I’d dodged a bullet, that I’d got away with doing something terrible? Why, after all this time, and all the happy memories I’d made, was there still that little sting, that tinge of unfairness lingering in the bottom of my soul?

Why do I still feel hard done by, robbed of what should have been such a happy time for my husband and I, the memories of bringing Alison home for the first time drenched in panic and fear? And is it, in fact, a bad idea to rake over the painful details of that time over and over again?

I arrived at UCD and after several phone calls, figured out where I needed to be (UCD is huge). I was met by the lecturer, Mary, who was absolutely lovely and very welcoming. We were both nervous because we didn’t know anything about each other.

“So,” she said, after the introductions, “how was your experience of maternity services?”

“Well,” I replied, in a matter of fact tone, “the physical care I received was excellent, but the attitudes of some of the staff were… horrendous!”

“Oh, brilliant!” she exclaimed, clasping her hands in delight. “Well, not for you, obviously, I’ve no doubt, but this is the type of discussion we need to be having with our future midwives and healthcare professionals. I want you to be frank and brutal as possible. Lay it all out there, all the gory details!” I smiled with pursed lips, hoping I wouldn’t shatter like a china vase. Of course I know that in this disability game, you need to have a thick skin. Otherwise you won’t survive – simple as.

The students came in and Mary introduced me, before disappearing to my horror (I hadn’t realised that I was considered to be a guest lecturer). To put the students at ease I told them there was nothing they couldn’t ask me and that I would be honest in my answers. Telling them that I was told that I was a danger to my own baby hurt in all the usual places, but we did have a bit of craic when I told them I knew better than the Public Health Nurse about Alison’s reflux. They seemed absolutely horrified to hear that she visited us for six months solid, on a daily basis.

“Any advice for us future midwives?” came one of the questions.

“Listen to us,” I said. “You’re going to be coming out of this university with six years’ of study behind you, but at the end of the day disabled mothers are – and always will be- the experts. Very few disabled mothers decide to have a baby willy-nilly. This is a decision that we agonise over, and sadly a decision that many potential mothers don’t have the mental energy or the fight to follow through with. Don’t treat us like we’re stupid. Support us, don’t frighten us. Often we are frightened enough.”

When Mary came back in, she was surprised to see us all smiling and laughing, me most of all. I had managed to get ‘down with da kids’ and I could see that I had really got through to them. I was still in pain, but happy. I had changed minds, challenged perceptions through opening up old wounds. And those wounds were slowly healing again.

Alison turned seven on Saturday, so I have been a wobbly yummy mummy for seven whole years now. And although it’s had its challenges, I wouldn’t change it for anything. I missed her birthday as I was in college in Maynooth. On Sunday, we were asked for examples of self-advocacy, and so once again I went through how we advocated for the right to be parents. Our class was horrified, to my delight, because it confirmed to me that what we experienced was wrong.

I can’t change that experience. The comfort I can take from it, however, is that we proved everyone wrong. That we have a beautiful, intelligent daughter who made our lives purposeful and complete. Alison makes me want to be a better person every single day. She’s the one that reminds me why I speak out so much, why I hope one day that the world will be a better and more accepting place for disabled parents.

Recovering from the hurt in my heart will be a lifelong ordeal. But if I can help, encourage and educate others to make the lives of future disabled parents easier, it will be worthwhile. And hopefully, in helping others, my own soul might finally heal.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.
 

Progress is progress is progress…

So, it’s the end of 2018, which in some ways has felt like the longest year ever, and yet I remember sitting here writing last year’s post as if it were yesterday. It’s been a busy year, and here are just some of the highlights:

I did a “Begin your Novel” course in January, and I now am 26,000 words into Draft 2. Maybe I’ll finish it before I die.

I had a couple of job interviews, none of which resulted in me getting a job. May I respectfully ask how in the name of chocolate are you supposed to get experience if you need said experience to get a job? Grrr. Grrr.

I threw myself into promoting Independent Living, which I still think is one of the most important philosophies in the whole world, as it recognises disabled people as equal citizens with rights and choices. I blogged about it and also made a video as part of the #IndependentVoices campaign. I also got to work with some amazing ‘young’ people (I don’t believe I fall into this category anymore) and found out that the future of the Movement is in their capable hands. In September we had the launch of Independent Living Movement Ireland, formerly known as Center for Independent Living Ireland.

I applied to be on the UNCRPD supervisory committee, but was not selected. I did get an interview though which was a huge honour.

I gave two lectures to university students – one about the use of technology to students in NUIG via Skype and the other was about parenthood and disability to UCD students (which was a bit impromptu as I stood in at the last minute for a friend who couldn’t make it). Nerve-wracking to say the least.

I wrote an open letter to An Taoiseach Leo Varadkar which was published in the Tullamore Tribune and also read out on Dublin South FM (Ger Scully and Sean O’Kelly, if you’re reading this, many thanks).

I started the Certificate of Disability Studies in NUI Maynooth in October, arrogantly thinking it’d be a piece of cake only to find it’s actually pretty intense with a lot of work and reading involved – oops! It’s so much more than getting the piece of paper for me, though. I want to understand the roots of the oppression of disabled people so that I know how to fight against it.  That said, I need  to stop speaking out in class. I’m coming across as a know-it-all and I will find myself getting beaten up for my lunch money. (If I don’t pass it, I may cry)

I’ve semi-committed to writing another monologue in the New Year with the talented Peter Kearns (Once this course is finished, though – my head is melted)!! Hopefully it materialises.

Oh, and I’m kind of doing some driving lessons! Think the instructor is a little dubious as to whether I can actually do it or not… only time will tell! Fasten your seatbelts!

And finally, I just about managed to keep this blog active (though don’t expect too much before my course finishes in April. Three essays and a group presentation will eat my time). Thanks to all my loyal followers for liking and sharing this pile of drivel. Your cheques are in the post!

Best wishes for 2019! xx

 

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