Personal Assistance Should Be a Right

(This article was first published in the Tullamore Tribune week ending 20 December 2019. Many thanks to Ger Scully, editor of the Tribune, for this).

On the 19 November 2019, the possibility of legislating for Personal Assistance as a legal right was debated by the Dáil. The motion was brought forward by Donegal TD Thomas Pringle from Independents For Change, who worked in collaboration with Independent Living Movement Ireland (ILMI) in promoting the right for disabled people to access Personal Assistance in Ireland.

 

The Personal Assistance Service and Independent Living are intertwined. In their truest form, Personal Assistants are not “carers”, nor do they have the right to make decisions on behalf of the disabled people they work for. A Personal Assistant has been defined by many as “my arms and my legs”, in other words, the role of a Personal Assistant is to assist with or perform tasks that the disabled person (known as a “Leader”) cannot do for him or herself. The Leader is considered to be the expert in their own needs and directs the Personal Assistant on what he/she wants done. When the service is delivered properly, the PA does not “look after” the Leader, but rather enables him or her to live a fulfilling life – enter employment, access education, enjoy social events and raise a family – depending on the Leader’s own life goals.

 

In theory, a Leader’s service is customised to suit his or her own lifestyle. However, in reality, only a select few disabled people in Ireland are enjoying the full benefits of Independent Living. Since the onset of the recession in 2008 the lack of financial resources, coupled with a growing demand for a Personal Assistant Service, has led to overmedicalised assessments and more stringent criteria, leaving many disabled people with little or no service. Emphasis has been placed on “high dependency needs” such as feeding, showering and dressing. While this might make sense to the powers that be, in reality this can lead to a depressingly low quality of life for the Leader concerned, being all dressed up and nowhere to go.

 

Many Leaders make a distinction between a “home-help” service and a PA service. A home help works to a rota provided by a care organisation and merely assists clients with basic tasks such as Personal Care and feeding. Often, a client has little or no say in what tasks they can be assisted with, nor do they have control over who delivers these tasks. It is not uncommon for a “client” to be assisted by many different people, and a disabled person might not know who is assisting them from one day to the next. Conversely, a Personal Assistant is recruited by the Leader themselves, and matching personalities, as well as a willingness to carry out certain tasks, is a crucial element to the success of any PA/Leader relationship.

 

The original intention behind the service was that the Leader could dictate what they wanted to do and when, just like every other person in this country. Moreover, the philosophy of independent living espouses that the Leader should choose who assists them, what they need assistance with, and when. A distinct benefit of the PA service is that it reduces our reliance on our family and friends so that we can enjoy a relationship as equals, not as “carer” and “cared for”.

 

However, in spite of the ratification of the United Nations Convention on the Rights of People with Disabilities (UNCPRD), Personal Assistant Services are not currently a right for disabled people in Ireland. Consequently, this leaves the service vulnerable to the constant threat of cutbacks, as the government illustrated in 2012 when it endeavoured to eradicate the entire service overnight. People power alone, in the form of demonstrations outside the Dáil saved the service, but the PA service in its current form is not allowing disabled people to enjoy a reasonable or enjoyable quality of life. A report published by ILMI in 2017 conveyed that nearly half of people in receipt of PA services were getting the equivalent of 45 minutes a day. This is entirely unacceptable and clearly illustrates the need to legislate for PA Services.

 

Therefore, the motion which was brought before the Dáil and subsequently passed unanimously was a hugely historic day for disabled people in Ireland. It heralded a shift away from the notion of disabled people as passive recipients of care to people who had human rights and who deserved access to the tools that enable them to participate equally in society. For the first time, Personal Assistance was debated in the Dáil using the language of rights, signalling a shift away from the misperception that disabled people are merely passive recipients of care.

 

Alas, although this small battle has been won (and how sweet the victory does taste!) the work for those who want equality for disabled people is far from over. We cannot afford to be complacent or to take anything for granted. Now is the time to educate people, to create awareness of the importance of our PA services and to ensure that our government delivers on its promise to make independent living a basic human right.

 

For more information on the ILMI #PASNOW Campaign, visit www.ilmi.ie or follow us on Facebook www.facebook.com/ILMIreland  or Twitter @ILMIreland

 

Remembering John Doyle

It was October 13, 2016. Martin Naughton had just died, and the entire disability community was in mourning. Martin’s death was at a time when I had made a monumental decision, for the thousandth time. I was ready to kiss the world of disability activism goodbye and become a full-time freelance writer. I had spent too long caring about the degeneration of the philosophy of independent living. I had blogged about it, spoken about it and still I felt empty inside, as if the wonderful, magical world of Independent Living only existed in fairy tales.

A week later, I received an email from the wonderful Susan O’Brien in Carmichael House Centre for Independent Living (or Independent Living Movement Ireland as it is now known) asking me if I would be interested, along with other activists, in organising an event to pay tribute to Martin, who was considered to be the Irish Father of the Independent Living Movement. I accepted Sue’s kind invitation, and a week later found myself sitting like an imposter among some of the greatest activists in Ireland: Dermot Hayes, Ann Marie Flanagan, Mick Nestor and the legendary Shelly Gaynor (Shelly had been to the forefront of many protests against cutbacks to Personal Assistant Services). There was another man there who seemed oddly familiar: even though I’d never met him before in my life, I felt like I’d known him a long time. His name was John.

As the group discussed plans for the memorial event, John’s enthusiasm struck me and inspired me to volunteer to manage the social media and create a blog for the event. I felt more confident in my own voice and started to open up and share my ideas. In December 2016, I started talking to John over Facebook about how disillusioned I’d become with Independent Living in Ireland and how I felt that things had become overmedicalised.

“We are the experts in our own lives,” he said. “The HSE supports the medical model. They will never understand the true meaning of Independent Living or rights.” I offered the idea that we could educate those within the HSE, but John was having none of it. Over the following weeks we fought, we clashed, we agreed on some points. John said that it was important to have those conversations, to make things clearer in my own head.

At this point, there was talk of me joining the board of CIL Carmichael House, in early 2017. I was having serious doubts about it and John, who was concerned about me, asked me why.

“John, I’m not experienced enough to go onto any board, let alone onto a board of an organisation I’ve respected for years. Sure, I can talk the talk but I haven’t done anything tangibly constructive for the movement the way the others have. I don’t know what I’m doing.”

John wrote back: “Nobody knows what they’re doing, not at first anyway. Martin spent his life taking risks, and look how that paid off! You have such passion. Let that drive you.”

But I still didn’t feel worthy so I shied away from the Board. Determined to give something back, however, I instead threw myself into the memorial event. As a group, we named ourselves “By Us With Us”. In addition to managing the social media for the event, I wrote and consequently performed a dramatic monologue, which was close to the bone as it explored the damage caused by internalised oppression when Alison was born.

The months flew by. Before I knew it, it was May 2017 and I had not seen John since February. Nor had I heard much from him. In August, I was devastated to learn that John had lung cancer. My mum had that too. Generally, the prognosis for lung cancer is not good. Naturally, John pulled away from the organisation of the event.  Before this, he had been guiding me in managing the blog and Facebook page. His silence was eerie.

Not wanting to bother John, I asked other friends how he was doing. Apparently he was trying to put a brave face on it but he was terrified. I continued working with By Us With Us and getting to know Shelly. Soon, I would not be able to imagine my life without her as a friend, and she remains a massive part of my life.

Finally, the big event came on 23rd September 2017, and with it came my dramatic debut. It was so raw. The pain was supposed to be that of my character’s, but it was obviously I who was crying on the stage, not “Rachel”. The performed drained me and much to my disappointment, I had no choice but to miss the rest of the event and take it easy. At nine o’clock that evening, my phone pinged: a message from John. All it said was “I heard you were brilliant, well done Sarah”.

That was the last I ever heard from him.

John died on the night of 26th November. My heart ached, and I couldn’t say why. I barely knew the man; realistically I only met him face-to-face a handful of times. I cried when I heard. The thought of his children facing the rest of their lives without their dad, the loss within a disability community that had lost so many people, including Eugene Callan, four days after the memorial event.

For some reason, John’s death angered me. I began to think of all the disabled people I knew,  young and old, who were grappling with the same shite that disabled people grappled with thirty years ago. How could there be so little progress between my generation and John’s? As if possessed by some intangible demon, I sat at the keyboard and typed blindly, my own salty tears stinging my eyes. I could hear John saying (though I can’t remember whether he actually said this, or if he implied it), that from the cradle to the grave, all disabled people seem to do is fight.

I didn’t dedicate the poem to John openly at the time. I felt I had no right to. I barely knew the man. Others had a historical connection to him that I didn’t have. So I shared it, but didn’t mention John.  Now, I dedicate this poem to John, two years after his passing.

In 2018 I was asked if I would like to join the Board of Independent Living Movement Ireland. Again I said, “Others have more experience than me.” Shelly’s response was the exact same as John’s had been and I felt that he was there, dragging me back to the world of activism which frustrates me and makes my soul sing in equal measure.

As a movement, we have made fantastic progress. Last week saw the passing of a motion in the Seanad that represented independent living as a fundamental human right for disabled people rather than a service that is granted on a whim by the powers that be within the HSE. This was always John’s dream, and now it’s up to all of us to make it a reality – to continue to fight, fight, fight.

Rest in peace friend (and thanks so much for the poetic inspiration – one of my favourite poems yet).

The Client (Short story)

 

 

I turn down the radio as I pull up to the house. It wouldn’t make a good impression to drive into the driveway, Jon Bon Jovi blaring as I get out of the car. Instead I choose to park just outside the gate I grab the little clear bottle of hand sanitiser that has been rattling around my dashboard all morning, wincing as I rub the stinging liquid into my skin. My first call of the day – well, my first call ever, actually. My hair is tied back and I’m wearing the freshly ironed uniform given to me by the agency. The app I’ve downloaded onto my phone informs the admin team when I’ve arrived; I wait until 8 A.M. on the dot before “clocking in”. There’s no point clocking in early; I won’t get paid for it anyway.

 

The unkempt garden looks like a magical Christmas wonderland in this heavy frost and suffocating fog. Underfoot lies a glassy red and orange leaved carpet, which could easily be mistaken for a skating rink. I navigate the driveway with caution, cursing myself for choosing these snappy-looking heels. I still wear them, even though I left the solicitor’s firm a year ago. Well, left isn’t the right word, exactly, but I never elaborate unless asked. Come to think of it, I’ve never been asked; this is my first job since packing up my small, cramped desk of nearly eighteen years.

 

I ring the doorbell, hearing it echoing up the hall. On inspecting my notes this morning, I read that this client has a key, hidden in a small brown box under the unruly shrub in the corner. However, I don’t think it would be appropriate to use it for our first meeting. A shadow appears in the hall. The height of the shadow doesn’t even reach my chin. I inhale sharply as the blue door opens.

 

“Hello there!” I say, with as much enthusiasm as I can muster. “I’m Marie. I’m your carer today.”

 

My client merely grunts in reply, swinging her wheelchair back so I can squeeze past her in her narrow hall. The bulb overhead is far too bright; under its harsh, unforgiving light, this woman looks fifty, but I know from reading her file that she isn’t even thirty yet. Some of them are just like that though, aren’t they? Old before their time. Her mouth is fixed in a firm line, her fists are wrapped around the wheels of her chair. She isn’t impressed to see me.

 

I follow her into the kitchen, which was once a buttery yellow but has been made grubby with fingermarks and blackened with smoke. Over the small, white, standalone hob/oven in the corner, splatters of oil and bits of pasta cling forgotten to the walls behind. A St. Brigid’s cross hangs sideways over the door. On the kitchen door itself, as I close it behind me, there hangs a 2017 calendar from Emo Oil, on the March page. Time seems to have frozen since: it’s November 2019 now. Certainly the table looks as though it was abandoned during a zombie apocalypse: a stack of old Offaly Independents, a thick-based laptop with the screen closed down, an array of old socks. It saddens me to think that this is how any thirty-year old woman should live.

 

“So, according to your care plan,” I say as I flick through the pages, “you need a hand with getting dressed and your breakfast which is normally jam on toast. Is that correct?” I smile at her as I pull on the latex gloves, a standard issue from head office. She doesn’t smile back.

 

“Where’s Nuala?” she says in an accusing tone.

 

“Nuala?”

 

She’s exasperated with me already. Not a good start to the day.

 

“Yes, Nuala. The woman who normally works here. I wasn’t told she was being replaced.”

 

This must be a test, I think. “You’ll have to ask the office. I was just sent here this morning. I’m just following orders. Don’t worry, I’m fully trained. I know what I’m doing.”

 

“Level five?”

 

“Just got my certificate last week,” I say, swelling with pride as I relive the moment I was handed the award, as well as an extra award for being top of my class. I’d always had a mind for theories, for essays. The course had been a piece of cake.

 

She rolls her eyes and makes a retching noise. “You’re early,” she says, rummaging in her handbag. To my horror, she pulls out a black cigarette box. “I like to have my morning fag before I do anything.” Before I can stop her, she pulls one out of the box and lights it.

 

Oh hell, I think to myself. I hadn’t imagined landing head-first into a scenario like this. I wonder if the office staff are going to pop out from behind the door and shout “Smile, you’re on Candid Camera!” popping streamers and blowing those annoying kazoos that are thankfully disappearing from kids’ parties these days. God bless the drive to cut the unnecessary plastic.

 

She’s already taken three pulls before I have the courage to say: “Sorry, this is my workplace. You can’t smoke.” I would go as far to say I hate smokers. They’re so inconsiderate and selfish, and they rarely think of anyone but themselves.

 

She shrugs, continuing to smoke, blowing the smoke in my direction, which I think is definitely taking the piss.

 

“Yeah, well, it’s my house.”

 

Her obstinance is grating on me. “Well, according to this handbook,” I say, grabbing it out of my handbag and flicking through the pages, “section fourteen says that because of the Tobacco Act 2004, all workplaces must now be work free.” I stuff the manual back into my bag. Thank God I didn’t leave it on the kitchen table; I knew that I’d be needing it. “And now,” I continue, looking at my watch, “I only have twenty-five minutes to get you done, so if you want a shower, you may hurry up. I have five other clients this morning.”

 

Her face is hurt, like a chastised child’s.

 

“You’re not allowed shower me,” she informs me. “That’s a two-person job. Didn’t they teach you that on that fancy FETAC Level 5 course? Anyway, it’s not Thursday.” Bloody newbie, I hear her mutter to herself.

 

She stubs the cigarette out on a saucer and wheels out past me again. I follow her, feeling the damp emanating from the walls. Her bedroom is small and dark, and the floor is covered in clothes and shoes. I can barely follow her in. Looking at the mess, I can’t help but feel sorry for her. If only I had time to tidy up for her, but I don’t. it’s only my first day but I’m determined to make a good impression; ergo, I must be punctual for all my clients. Anyway, this lady, like all the people I’m scheduled to help this morning, surely knows what the drill is by now. She knows that I’m not made of time. I wonder does she do this with all her carers: try to stretch out her time, chance her arm?

 

“Can I have my Adidas hoody and tracksuit bottoms?” she asks me. I can’t seem to put my hand to the bottoms; the room is in chaos. Though I can see why. Apart from this tiny dresser, this girl has no accessible place to store her clothes. I haven’t seen the hotpress, but I’d imagine the shelves are too high to be reached from where she sits in the wheelchair.

 

Time is really running out now. “I can’t find your bottoms. Can you wear these Reebok ones instead?”

 

Again, she doesn’t look happy. “Go on then,” she says, sitting still as I pull them up her legs.

 

It must be strange for her, I think, being dressed by a total stranger. Honestly, I don’t think I would like it. As I sit her back down in the wheelchair, for a second I catch a glimpse of my own future, and I don’t like it. If I’m being honest with myself, I think I’d rather be dead. That’s what Tom and I always said: if we became old or crippled before our time, we would be on a plane to the Netherlands and we wouldn’t be coming back. I personally could never burden anyone like that.

 

“Now,” I say, too brightly again. I keep forgetting that I’m not talking to a child. And yet there’s something childlike and vulnerable about her. For starters, she’s evidently unable to keep house, although I’m starting to suspect this might be because she doesn’t want to. “Any plans for today?”

 

She shakes her head, staring out the small, dirty window into her jungle-like back garden. I wonder if I’m the only person she’ll see today, at least until the night carer comes back to help her get ready for bed. A hacking cough shakes me out of the daze I’m in.

 

“I might go to the day care centre.” Her voice is indifferent. If this was the most exciting prospect in my day, I suspect that I would be equally unenthusiastic. “I don’t like going there too much. Bunch of auld grannies.” She looks up at me. “I don’t suppose you have time to straighten my hair?”
For what I think. The day care centre? I wouldn’t imagine there to be any fine young specimens in there. I worked in the Ballingar centre as part of my work experience and it was like witnessing an eightieth birthday in a care home. It was depressing to think that people the same age as I was lived like this, often only seeing the four walls of their home. I think of myself at thirty, almost fifteen years ago. John and I already had five years paid off our mortgage on our beautiful four-bed detached in Whitehall Estate. I was juggling my blossoming legal career with two kids under the age of five. I remember the odd days that I skived off work, meeting Margaret and Brenda for coffee, and sometimes the odd liquid lunch. Even at the time, I remember thinking that I would look back on those days with nostalgia. Now, I was looking down at a girl – sorry, a woman – whose excitement probably revolved around that morning fag and some inane chit-chat in a day care centre.  Worst of all, she seems to be resigned to this. This is her life. I feel a little deflated.

 

We sit in silence as I straighten her hair and I watch in satisfaction as I tame her unruly locks into a professional-looking bob. I missed my calling, I think to myself. I should’ve been a hairdresser. To my surprise, the edges of my companion’s small mouth are inching upwards towards her cheeks. I feel a lukewarm glow in my chest, a hint of a natural high. As if by magic, this lady now looks slick, elegant. If this is having such an effect on boosting my self-esteem, I can only imagine the effect that something as simple as having her hair straightened has on her.

 

“Now,” I say, looking at my watch. “I’ve five minutes left. Do you want something else? Breakfast? Cup of tea?”

 

She nods. “Tea and toast would be great.”

 

We go into the kitchen and she shows me where everything is. I make her toast and cut each slice into four automatically, as I used to do for my children. This makes her smile a little.

 

“Sorry. I suppose I should’ve asked you what way you cut your toast.”

 

“It’s fine. Toast is toast,” she says.

 

My forty-five minutes are up, it’s time to leave and go to the next client. I pull out the care plan, and tick the boxes Personal Care and Feeding. I’ve done what I was sent here to do. I suppose there has to be some way of regulating the industry, certain standards to be met. But it must get boring for her, the same thing morning after morning. On reflection, I think she handled herself quite well, considering I’m a total stranger, rooting around her home.

 

“Well, I’m going to head,” I say, gesturing towards the door.

 

To my surprise, she nods and says, “Will I see you tomorrow?”

 

“It depends on my rota, I’m afraid. Sorry,” I add, and I mean it. This girl obviously doesn’t know who’s coming into her house from one end of the day to the next. I could not imagine being okay with such invasions to my personal space.

 

I trot back towards my car, cursing myself again for wearing these damned high heels. For the first time since leaving work, I’m missing the chaos of my desk, being able to hide behind piles of unopened letters and emails, dealing with cold, hard logic instead of having to face my feelings and the realities of others.

 

As I drive away, I realise that the girl – sorry, woman – never even told me her name. Maybe she assumed I knew. Maybe she thought it wouldn’t matter, her being on a long list of clients waiting for my help. I glance at the file beside me – her name is Denise.

 

It’ll be interesting to see if I ever see Denise again. Perhaps I will, perhaps I won’t.

Either way, I’ll always have other clients.

I pull up to the next house, ready to do it all again.

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

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

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

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

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

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

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

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

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

 

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

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.

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