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)

 

 

 

 

 

 

 

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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.

 

 

 

 

 

 

 

 

 

 

 

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.
 

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.

 

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?

True to Me

I’m sure each and every one of you have been wondering where I’ve been, and have been spending your waking hours pining for another thrilling instalment of this blog. My apologies for my absence, but believe it or not, I’ve been quite busy writing! I completed a ‘Begin Your Novel’ course during the first week of March and realised, to my great disappointment, that what I’d written so far is an unsalvageable mess. So, I did what any self-respecting writer would do and I started again, which has taken up a great deal of my headspace and time. Second time lucky, right…?

I also realised that I’m a cranky old bitch who, while I don’t mind blogging about disability issues, I hate talking about the day-to-day realities of having CP. To be honest, I bore myself so I wouldn’t inflict that on other people. I live as average a life as I can, juggling writing with raising my daughter, and I am lucky insofar as if I can keep some sort of realistic balance and not push myself past the point of redemption, I can get away with keeping a number of balls in the air. I’ve been conditioned to believe, through interaction with other die-hard activists, that it’s society that truly impairs us and that we need to keep challenging these barriers; they, and not our impairments, are the real source of inequality facing disabled people in Ireland.

Lately, however, I’ve been having doubts about my own beliefs, and these doubts have stopped me from blogging as I normally do. Who am I to question the system? Who am I to maintain that it’s society that disables us? Am I too angry? Have I become the proverbial ‘crip with a chip’ that everyone hates? And am I willing to quieten things down a little, stop being so extreme in my loyalty to the pursuit of pure equality and the philosophy of Independent Living (if there even is one any more)?

The answer to the last question is no. And I hate myself for it, I really do.

On Monday night, Tom Milne, Catherine Molloy and I partook in a radio show called the Open Door hosted by the wonderful Ann Marie Kelly on Midlands 103 where the theme of the show was my poem, ‘Fight, Fight, Fight.’ I have to admit that I acted like a pig-headed jackass towards Ann-Marie, which she didn’t deserve because she was very welcoming to me. But I wanted to highlight so many issues facing people with disabilities when she wanted to talk about my impairment and my day-to-day life. I felt frustrated. I didn’t want to be seen as inspirational (lads, I haven’t had a job with a steady wage for three years). I felt ashamed of myself. I mentioned my novel and what I want to achieve writing it but I don’t know if I’ll ever finish it. (It is the main item on my wish-list this year).

And up until an hour ago, I was struggling to find words to explain why I felt so frustrated in myself. Having stared at a blank screen for a whole half hour, I eventually said ‘sod this’ and decided to whittle away the evening hours watching TED talks on YouTube. To make myself feel better, I decided to watch Francesca Martinez’s TED talk in the name of ‘disability research’. Francesca Martinez is a writer, activist and comedienne with Cerebral Palsy who wrote a fantastic autobiography What the **** is Normal? In her talk, Francesca talks about how she spent her teenage years trying to fit in (just like I did) and how her life changed at nineteen when her friend Dylan gave her life changing information: ‘You are you. Yes, you walk differently but no two people walk the same way. You are Francesca, and you can define yourself any way you want.’

Francesca had a light-bulb moment, just as I did watching the TED talk. We spend so much time, she says, trying to conform in a world obsessed with consumerism, being told that if we buy lots of stuff, wear certain things and look and act a certain way, then we will be accepted by our peers. But, as she points out, the illusion this creates isn’t real. And that’s when I realised exactly why I felt torn apart inside.

I want to be real. I want to be seen as a real person. Yes, I am capable of doing some great things but I also reserve the right to be seen as a cantankerous git, someone who doesn’t always get it right. I want to be seen as someone who challenges the status quo, who is willing to take risks. I can’t change the fact that I  have Cerebral Palsy, but if I persevere, I might be able to change people’s misconceptions and eliminate barriers to full inclusion to society.

And I know that those who really matter will completely understand where I’m coming from. In the immortal words of Homer Simpson, ‘I never apologise. I’m sorry, but that’s just the way I am.’

 

Rebel Girls

My six year old daughter, like most children, likes a bedtime story before she goes to sleep. Her latest favourite book is Goodnight Stories for Rebel Girls, a collection of stories about famous women who broke the mould in some way. There’s over a hundred of them: Coco Chanel, Jane Austen, Amelia Earhart to name a few. However, no matter what ones we read, she always insists on reading the story about Rosa Parks. It’s the story of a woman of colour who refused to give up her seat on the bus for a white person. Eventually, thanks to Rosa Parks, apartheid soon became illegal.

‘Why did black people and white people not sit together?’ my daughter asked, confused. There’s a healthy mixture of nationalities in her class, and my heart sunk at the idea that she would, unintentionally, start to label them as different.

‘Because people are mean,’ I replied. ‘Sometimes people make up stupid rules to suit themselves and hurt others, for no reason. It’s a bit like bullying.’

‘People are mean to you too, sometimes,’ she observed. ‘They laugh at you, call you names. But you never get hurt, and you never give out to them or get angry about it. If I were you, I would.’

I looked into her round blue eyes and smiled by way of reply. Plenty of time when she’s older, I thought, to sit her down and explain everything. How I grew up in a mainstream environment where I spent too much time trying to fit in. How I fought to prove myself as a person of worth, in school, in college and at work. How hard I’d fought to prove myself as a worthy mother, not only to professionals, but to Ali and even to myself.

Tomorrow, the 8th March marks International Women’s Day, a day to acknowledge and address both the real challenges facing modern women and the fantastic achievements that women have made throughout history.

But today, 7th March 2018, marks an equally significant milestone: a solid commitment from our government to ratify the United Nations Convention on the Rights of People with Disabilities (aka the UNCRPD). The disabled population of Ireland has been waiting for this for nearly twelve years. And it seems inappropriate of me to admit that after all this time, after blogging about it so much, I don’t feel that lightness, that relief that I thought I would.

Oh, it’s a victory for sure – we have won a battle, all right – a battle we should never had to fight in the first place. The onset of the recession brought waves of devastation to the disability sector, and the aftershocks are still in evidence today. The disability budget was stripped down to the minimum, and many disabled people lived basic lives. Unable to afford their own accommodation or to get a job, many were forced to live with their families or in segregated/institutionalised settings. Fear soon consumed us, and many of us were left afraid to complain lest whatever we had left was taken away from us too.

I have spent my adult life hearing stories about wheelchair users being trapped on trains, about disabled parents living in fear of their kids being taken (and sadly I’ve also heard stories of people who’d love to become parents but don’t have the energy to fight the system/jump through hoops as we did), about people going for countless job interviews and never getting a job.  And as much as I’d love to think it would, ratifying the UNCRPD isn’t going to mean anything unless we truly believe  that we are equal and that we are willing to start a new narrative.

Tomorrow, on the 8th March, International Women’s Day, I will be thinking of all the wonderful rebel women I know, especially those with disabilities. The ones who fought to be educated. The ones who decided that they didn’t want to spend the rest of their lives in the back room of their parents’ houses. The ones who had lots of sex and had babies. The ones who continue chipping away at the inequality they face, both as women and disabled people. I’ll be thinking of my mother, who didn’t believe in mollycoddling me, who taught me how to be self-sufficient. I’ll be thinking of my daughter, the future generation, who I know will take it upon herself to make the world a better place for the rebel girls of the future.

And tomorrow, I’ll continue to lead by example, as best I can.

 

Cripple for sale (Dramatic Monologue)

Hi folks/legions of loyal followers/Dad(!)

I wrote this monologue just before Christmas. It’s called ‘Cripple for Sale’. The rationale behind this monologue is that in Ireland, disabled people are afforded neither rights nor dignity owing to our government’s failure to make significant investment into Personal Assistant Services. The HSE has pledged money for home help and home care services in 2018, but it’s unclear whether there’s been any extra investment into Personal Assistant Services.

Many of us, including myself, want to be seen as equal in Irish society. Paradoxically, however, we need certain supports – human, technological, accessibility and financial (to name a few) in order for this to happen. Sometimes I find, as a person with a disability, that it works against you if you portray  yourself to be too ‘capable’ or ‘able’ as the powers that be don’t take a holistic approach to service provision and instead provide services based on absolute ‘need’. Consequently, people with disabilities are becoming institutionalised in their own homes and failing to reach their true potentials.

Every October, come budget day, the Center for Independent Living and the Irish Wheelchair Association make ‘Pre-Budget Submissions’ outlining why substantial investment is needed in the disability sector. We are at higher risk of poverty owing to being stuck in a benefit trap. The Disability Allowance is means tested and doesn’t take into account the extra costs of having a disability – the cost of equipment, extra heating, durable shoes, pre-prepared veg – little things that make a huge difference in the lives of many.

We don’t want to be charity cases. As I said before, charity is too unreliable. We need our human rights to be protected. And with rumours that the ratification of the UN Convention of the Rights of People with Disabilities has been postponed until 2019, disabled people remain dependent on the goodwill of the State.

Anyway, here’s my monologue ‘Cripple for Sale’. Enjoy!

 

A young woman sits in a wheelchair with a tartan blanket on her lap, shaking a bucket.

Cripple for sale! Cripple for sale!

A cripple’s soul is for sale!

I ain’t too fussy about the price; any old coppers will do!

Come on now, dig deep, it’s for a good cause!

Hey you – yes, you- oi – ! walking with your head down

Avoiding eye contact with me –

What do you think will happen if you look at me?

Do you think I will try and manipulate you with my sad eyes,

Remind you that it could be you sitting here

Catching trails of your own saliva on the back of your hand

Hands and legs jerking like a woman – possessed!

What’s that you say…? … you’re frightened? Frightened of me…?

How the hell do you think I feel?

I’m sitting here naked, cut open, on full display

Every spasm, every jerk, every bloomin’ thing I have offered up in some sacrifice…

…oh, I’m sorry, have I made you uncomfortable? Oh dear!

I didn’t mean to… that’s why I thought it best to sit in this wheelchair… even though I can walk…

Well, you may not call it walking… I suppose it’s more… ambling…crawling on foot…stumbling one foot after another…

Something like that ‘freaky’ creature in Lord of the Rings…

A cripple falling over would not be a good look

…but I’m sorry, I haven’t tried hard enough…

Maybe if I had spent more time doing that physio like you said… or if I had gone for that life-changing operation when I was six… Maybe if I had been a good little girl and done what I was told I wouldn’t be sitting here, in the freezing cold…

In a country where the only right I have is the right to be a defensive little cripple… alive only for the mercy of this wonderful, merciful government…

Oh, sorry I’m moaning again! aren’t I so lucky to be so far removed from that barbaric regime that defined Nazi Germany… that story that everyone knows and no-one talks about –

a place where cripples went in to be rehabilitated and came out…

Well…

What am I talking about now?

We don’t want to be upsetting people… after all…

Things are so much different now, aren’t they…?

…aren’t they?

People like me are even allowed out now… well… of course a couple of minor preparations need to be made…

You need to pass that pesky risk assessment, you know, the one that determines whether you’re at risk of falling, or choking, or drawing attention to yourself by being your wobbly self – phew!

…but yes, we are so much more free now, I mean, can you actually imagine how depressing it would be to be holed away in some ancient grey-bricked hospital, living life like a well-programmed robot, so well trained that it never occurred to you to feel unhappy… or to feel anything…

Oh of course I feel, but not what you want me to feel…

I suppose you want me to feel lucky and grateful

That you took the five seconds out of your day to throw the loose change from the bottom of your handbag into my bucket

To help the cripples have a better life

So you can go home to your family and tell them that you’ve made a difference to ‘those people’ –

You’re definite about this – we’re the same really (but not quite)

You want to help me, but you want to keep me at arms’ length – lest I infect you with my imperfections

Don’t think I haven’t noticed that disinfectant gel you keep in your handbag

To protect yourself from those ‘cripple germs’ –

And I suppose me being offended is a complete waste of time –

Just like us both pretending that you’ll ever really see me as your equal…

You haven’t really been listening, have you…?

So I suppose there’s only one thing I can do…

CRIPPLE FOR SALE!

Any old coppers will do.