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.

 

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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.

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

 

Questions, questions everywhere

I love writing and reading about disability but I fear that I might have done so much of it lately that it has actually melted my brain into slush. When I look at an article by Dan Goodley or Colin Barnes, my brain shuts down and I refuse to take anything in, which is an enormous concern giving the nature of the course I’m doing (in case you’ve missed it, I’m doing the Certificate in Disability Studies in NUI Maynooth. I must be mad).

But during the Study Skills seminar  we had this weekend, it occurred to me that the reason I’m not taking anything in is because I’m not being critical – I’m reading but I’m not probing, not asking ‘why?’ or agreeing or disagreeing. And when I thought about it, I thought perhaps that’s why it sometimes feels that we’re moving further away from equality for disabled people – because we aren’t asking ourselves (and the powers that be) important questions about topics that need to be discussed in order for us to be recognised as equal. Questions such as:

  •  Who has the authority to decide what you can’t do – you or other people? Do ‘professionals’ always know what’s best for you? Do they always act with your best interests in mind?
  • Who profits from your impairment? I mean, seriously, a set of four wheelchair tyres can cost over a grand whereas a set of new tyres for the car is around two, three hundred Euro. My tricycle, I’m informed is worth about four grand, whereas you can get a state of the art mountain bike for a grand. An adapted car costs far more than the same model of car, unadapted. Why?
  • Why has the head of Irish Rail not been brought to answer a case under the Equal Status Act? If you’re a regular train user you might have noticed that there is a sign saying ‘We comply with the Equal Status Act’ in the wheelchair space. Can that be true if you have to give twenty-four hours’ notice to travel?
  • If a disabled person decides that their primary aim in life is to be an absolute twat, should professionals have the right to comment? To stop them? To safeguard them?
  • These particular questions are addressed time and again without being resolved: Does the Personal Assistant Service exist now as it was originally intended? Should a Personal Assistant have the right to comment on your lifestyle choices? Do they have the right to refuse to enable you to make these choices if they’re ‘not what’s best for you’? Who knows what’s best for you?
  • Should your right to your own Personal Assistant (and the hours you receive) be affected by the availability of a spouse or family member to act as your ‘carer’? What if you don’t get on with your family or they’re just using you as an excuse to claim Carer’s Allowance? (This has happened to people I know).
  • To what extent are we our  worst enemy? How much of the oppression we experience from outside sources is actually external, and how much have we internalised?  And in blaming  ourselves for being disabled, how much power are we willingly handing over to the powers-that-be, that make life-changing decisions on our behalf on a regular basis?
  • Is it dangerous to ignore the realities of impairment, and can we accept our impairments and limitations without handing over powers to the ‘so-called professionals?’
  • What will lead to the defining moment where disabled people can really be trusted to have full control over their own lives and budgets? I mean, why are disabled people being frightened out of trying Personalised Budgets/Direct Payments? Are they really that complicated, or are disabled people led to believe this so that (God forbid) they never truly experience any sense of control over their own lives?
  • If the UNCRPD has been ratified, why has there not been significant investment into Personal Assistance in the 2018 Budget? Why aren’t we building more houses for everyone, including disabled people waiting to move out of long-stay institutions and hospitals?

Achieving equality for disabled people lies in tackling these, and other tough questions. It means never settling, never accepting anything as a given without a logical and reasonable explanation. It means not taking equality as a given when many of us know this is far from the case.

When we stop questioning these important issues, we become complacent. And I think we can all agree that we simply cannot afford to do that.

 

 

Nonetheless, I Persist (Poem)

Hi all dedicated Wobbly Yummy Mummy Fans!

For the next six months or so I predict my posting on here will be a tad sporadic, so let me take this opportunity to apologise in advance. I’m studying for the Certificate of Disability Studies in NUI Maynooth, so that’ll be my priority for the next while. But I promise I will update this blog when I can!

In the meantime here is a poem inspired by what I’ve studied so far. Enjoy!

Look at you there, looking at me
As you will me to become whatever you see,
Your handy, capable hero, a huge lump of clay
to be moulded, designed in whatever way
you choose.

Choice.

You say, that if you had the choice
(and you say this so arrogantly, with your own voice)
That no way would you spend the rest of your life
Battling spasms, twisted limbs, pain and yet – in spite
Of this
I persist
To exist.

Do you honestly think that I cannot hear
That I’m the embodiment of all of your fears?
You tell me I’m great, a pure inspiration.
You don’t know my name! But you think
you still have the right to dictate my place
in this so-called ‘great’ nation.

I’m not here to inspire, or make you feel good
and yet I’m not able to live a free a life as I should.
I carry the weight of your negative assumptions on my back
While you casually remind me of all that I lack.

I’ll never walk properly, my hands are weak
And I sound like a drunkard whenever I speak.
Would I not be happier surrounded by ‘my kind’
where my existence wouldn’t push the boundaries of your tiny mind?

I am not scrounger, or inspiration, or hero,
And I won’t be hidden or locked away either.
I’m a Trinity graduate, a writer, a wife
Who, in spite of your assumptions, has a pretty good life.
My ‘incapacitated’ body bore a daughter full of light,
And she knows that, one day, she must continue the fight:
Fight for equality
Fight to be seen as ordinary –
Fight to make mistakes.
I’d rather be seen as flawed than a fake.

You see,
I am not your ‘handy-capable’ hero,
Or an inspiration,
Or a workshy scrounger,
Or a burden, or a waste of space.
This is no tragedy
I am me – spastic, wobbly, gabby
And, ‘in spite’
Of this
I choose
To persist
To exist.

 

An Open Letter to Taoiseach Leo Varadkar

From the desk of Sarah Fitzgerald (the views are my own and do not represent the views of any other disabled person or organisation).

An open letter to An Taoiseach, Mr Leo Varadkar,

Dear Mr Varadkar,

I hope this letter finds you well, or at least as well as you can be, given the current state of affairs. You don’t know me, and it’s unlikely you’ve heard of me: I’m just another BIFFO from the bog, like your predecessor, Mr Cowen. We’ll probably never meet face to face, and it’s a safe bet to say that it’s unlikely you’ll read this letter either. But it would somehow make me feel better to explain to you how I feel about today’s budget.

Firstly, it would be amiss of me to overlook the remarkable progress that has been made in Ireland over the last year for people with disabilities. After an eleven year wait, the United Nations Convention on the Rights of People with Disabilities was finally ratified. It was a wonderful, surreal moment, and your Minister with Responsibility for Disability, Mr Finian McGrath, should be very proud. But I’m a bit of a sceptic, and ratifying this precious document should only be the first step of a radical shift in attitude towards people with disabilities in this country.

Taoiseach, I have lived as a disabled person all my life. I am deeply aware of the horrific history of disability throughout the last century, not just in Ireland but worldwide: involuntary sterilisations, mass murders during the Second World War, people growing old in the back rooms of their parents’ houses, their very existence a taboo secret. In some ways, times have changed: we can live out in the community now (if we can access it), we can be educated in mainstream settings and not just in sheltered workshops, we can even get married and have children provided we are hardened against being told that we will always pose a risk to the little people we love most. This has been my narrative for as long as I can remember.

In the last ten years, another narrative has come into play, one that can be summarised as ‘budget cuts.’ You don’t need to be ‘au fait’ with the UNCRPD to agree that the recession had reversed the progress of the Irish Disability Movement to the extent where it has left us visibly shaken as a community. In 2005, I learned about the ‘philosophy of Independent Living’ and was surprised to learn that the expert on living with disability was… me! I learned how to trust myself, how to allow myself to make good and bad choices- something I’m still learning, truth be known. And it’s only now, ten years later, that I can see disabled people starting to trust in themselves and have the confidence to use our own voices.

As part of a collective of over six hundred thousand people in Ireland, I would respectfully ask you and your government to start seeing spending in the disability sector as an investment in our future and the future of this country. We are willing and ready to contribute, yet only thirty percent of us are in employment. One of the reasons for this, I believe, is down to a lack of investment in Personal Assistant Services. Now, when I talk about Personal Assistant service, I mean a service where we, the disabled people, are regarded as the ‘boss’ or managers of this service, a service where we get to pick what needs to be done, when and by whom. Cutbacks over the last ten years has led service provision to be based on a ‘medical model’ which focuses on the level of impairment rather than the level of ability of the individual. Priority in service provision is currently given to physio and personal care. So at the moment, a number of disabled individuals in Ireland are literally being helped out of bed in the morning, only to sit around in their wheelchairs all day, seeing nobody else until somebody comes back in the evening, often at half seven/eight o’clock (my daughter, who is six, goes to bed at half eight) to put them back to bed. The terms ‘carer’ and ‘Personal Assistant’ are used interchangeably by our government and the HSE.

Of course, people aren’t just trapped in their own homes. They may be considered by some of the three thousand people living in nursing homes and long-term stay wards in hospitals to be the lucky ones. Unfortunately, because of a lack of accessible housing and Personal Assistants, many people, including a thousand young people, are living in these settings, which is in direct violation of Article 19 of the UNCRPD. A significant investment in Personal Assistants and housing is badly needed. Life is too short to be incarcerated for a crime you didn’t commit.

I am a thirty-four year old wife and mother, a freelance writer and a die-hard believer in the Independent Living philosophy. I don’t want to be taken care of, or (controversially) to be overly safeguarded. I want to make mistakes, to embrace life, to live up to my potential. I shouldn’t have to downplay my abilities din order to get the support I need to make a real contribution to our society. I shouldn’t have to choose between conserving my energy for writing or having energy to parent when, with the right support, I can do both really well.

I shouldn’t have to ring my local train station twenty-four hours in advance of train journeys, and still cross my fingers in the hope that I’ll have assistance on both sides of my journey. You know the feeling of relief when the plane you’re flying on touches down at your destination? That’s how I feel when I arrive at the train station to find a ramp waiting for me.

And Mr. Varadkar, I am sick and tired of living this way. Being an activist is tiring. People are getting annoyed with me saying the same things over and over again. I get asked all the time: wouldn’t I rather write about puppies, or chocolate, or gardening? The answer is yes, of course I would. Sometimes I wish I didn’t give a shit, that my blood wouldn’t boil as I read about yet another young person trapped in a hospital, or my peers choosing between heat and food because their Disability Allowance only covers the basics of living. And yes, I’m angry – if this was your reality, you’d be angry too.

Today, I urge you to invest in us, to help us change the narrative of oppression, to enable us to contribute to Irish society in a meaningful and tangible way.

Finally, to paraphrase my good friend Shelly Gaynor, we’re not looking for anything special, just an opportunity to have the same quality of life as everyone else.

You owe it to us, our families and our children, to enable us to live the best lives possible.

Yours, etc.

Sarah Fitzgerald

Is Activism A Dirty Word?

Is ‘Activism’ A Dirty Word?

Every so often, I face a dilemma. It usually happens when I’ve taken on too much with writing or disability-related stuff and I find there’s just not enough hours in the day to do everything, which I find quite frustrating. It’s times like this where I find myself staring at the laptop screen, my finger hovering around the ‘delete’ button where the file that my so-called ‘novel’ is saved under. At these times, I’m ready to rip down this blog, pretend it never existed, start again.

It’s been quite a busy year, and hopefully it’ll continue to be busy for the rest of the year. In a bid to leave the disability world behind and fully embrace the world of writing, I joined the board of CIL and decided that I needed to take promoting the independent living philosophy much more seriously. (I know, it doesn’t make sense to me either). With every day that passes, I find myself becoming increasingly frustrated with the world around me, a world that I have worked hard trying to fit into. When another HIQA report is released detailing the shortcomings in residential homes, I roll my eyes, rant about it on Facebook, even write blogs about it.

Lately, however, I’ve been wondering: when it comes to fighting the status quo for people with disabilities in Ireland, am I copping out? I know I joke about being an armchair activist, but is that what I am – someone who’s good at talking the talk but reluctant to take any real action?

And is it because I’ve been conditioned to believe that no-one likes an ‘angry crip’, that no-one will ever take me seriously as a person or a writer if I choose to persistently bring so-called ‘disability issues’ into the mainstream with this blog?

I didn’t identify as an activist for a long time for this reason. I also felt like I had no right to identify as an activist. Looking back at all the great activists throughout history, they are great because they achieved something tangible. One of my greatest heroes, Ed Roberts, is the reason why many of us enjoy Personal Assistance today. During the ‘eighties, a group of wheelchair users in the US stopped buses and climbed up the steps to highlight how inaccessible they were. I love to hear such stories of radicalism, being a tad of the dramatic disposition myself. These so-called ‘radical’ actions brought about the implementation of the Americans with Disabilities Act 1990. Two years later, the first Irish Center for Independent Living was set up in 1992. These were real, remarkable achievements.

About a month ago, I watched a programme called In From The Margins, which was produced in 1993 but may as well have been filmed last week, such is its relevance to 2018’s disability politics. It followed Ursula Hegarty’s transition from residential care to a home of her own, and what struck me the most about the programme (aside from the late Donal Toolan having an abundance of curly black hair!) was that the issues Ursula faced are still facing people living in hospitals or residential homes today. It’s estimated that around three thousand people with disabilities in this country are living in residential homes or care settings, sometimes against their will, which is in direct violation of Article 19 of the United Nations Convention of the Rights of People with Disabilities. We know this because there are articles written about it sporadically every few months. Invariably there is uproar, and then it dies down.

Of course, these issues don’t cease to exist just because they’re not in the public domain anymore.

A friend of mine alerted me today that a guy called Kevin was talking to Joe Duffy on Liveline so, despite being in the library at the time, I immediately tuned in on my phone. Kevin, who was formerly a solicitor but had to leave his post early due to his MS, has been living in residential care in Dublin for the last thirteen and a half years. He is fully corpus mentis, but is lonely – in his nursing home, many of his fellow residents have dementia or Alzheimer’s, and therefore are unable to engage in conversation. He spends a lot of time in his room watching telly, and is so bored that he ends up going to bed early.

‘This is frightening,’ I texted my friend after listening to Kevin.

‘If it were any other sector of society there’d be uproar,’ she wrote back. ‘I try not to be an angry activist, but… Jesus!’  And there were those awful words, angry activist. What we strive not to be. Because no-one likes to listen to people drone on and on about the violation of human rights. We should be nice crips, smiling, not complaining all the time. After all, how are we ever going to be equal if we always point out our differences?

We have been conditioned to believe that anger is a bad thing, that we should be grateful for the progress that’s been made already, that protests are undignified and a waste of time, but history illustrates the opposite. So what are we afraid of? If you believe that one person, or a group of people can help change the world, then who are you waiting for? That person is the same person who looks back in the mirror at you every day!

You may be unpopular. You may feel alone. But you are an activist, so that’s par for the course. And my friend reminded me of a great quote, by Edmund Burke:

‘The only thing necessary for evil to triumph is for good men to say nothing’.

I’d choose activism over evil any day. Wouldn’t you?