Tag Archives: personal assistance

Tuesday Thoughts – Budget 2025: A Reflection

Posted on by
1

October is a reflective time for me. It’s bookended by my father-in-law’s anniversary on the first day of the month, and my granny Maye’s anniversary on Halloween night. Sandwiched in between is Martin Naughton’s anniversary. Regular readers of this blog should be familiar with Martin by now; he is considered the Father of the Independent Living Movement in Ireland. Next Monday, 13 October will mark his ninth year “away from home”, and he is still sorely missed, both in the capacity of being the forefront figure of the movement, and as a comrade and friend.

Martin came to mind this morning as I read the paper this morning on Budget Day. I have vague memories from my youthful twenties of Budget Day being an event that people got excited about. Now, it’s a day filled with dread, the ghosts of the 2008 recession continuing to haunt us. In 2012, then Health Minister James Reilly announced a sweeping cut in funds of €10m to the Personal Assistant Service. It was salvaged by the actions of a group called the Leaders Alliance, headed by Eugene Callan and included many disabled activists, too many of whom have also since passed away, who slept outside the Dail for three nights in protest. Leigh Gath told the media: “We’re often seen as the most vulnerable targets, but after today and however much longer we have to stay here, maybe that will change.”

Irish disability history was made that on 5 September 2012, when the government announced that they were rowing back on the inhumane and savage cuts, but the threat still lingers over disability services, Personal Assistance in particular. 

Back in 2025, I read in the Irish Independent this morning that “disability services will be a central part of the budget.” It goes on to state that “this will be used for more staff, more residential places, more adult day places and make some contribution towards assessment of needs.” This is great news for many families who are under strain, but I’m sceptical as to whether there’s any great demand for adult day places or residential places among disabled people themselves.

I accept that there are some disabled people who enjoy the camaraderie of attending day services, who love meeting their peers and who love going on day trips to places away from their families. I appreciate that for many accessing respite services that it allows them a level of freedom that they may not enjoy at home. However, it is crucial that disabled people themselves are holding the reigns of control over their own lives, that they themselves are demanding and designing the services that will enable them to get the most from their lives.

In my experience, and from talking to other people, the Personal Assistant Service is the one service that offers personal freedom and choice. It allows people to study, work, and to participate in society as contributors and consumers.  In its purest form, it lends people more choice and control over their own lives – to do whatever the hell they want, whenever they want. Honestly, it’s been over ten years since I felt this way about my Personal Assistant Service, and I know I’m not alone in this.

Since the cutbacks were supposedly reversed in 2012 – nearly thirteen years ago – advocates for independent living and disability (human) rights have had the frustrating job of having to educate the government, service providers and disabled persons themselves about the philosophy of independent living and the importance of adopting a human rights approach. That means enjoying a standard of life that our non-disabled peers might take for granted: living in our own homes, perhaps with a partner or a family; engaging in meaningful employment or educational opportunities; availing of social outlets or even going travelling. It seems that every time disabled people win the right to do these things, another cutback or legislative loophole pulls the rug from under our feet.

Luckily, however, we are, in theory, in a better position to push for an acceptable standard of living than we were in September 2012. The UN Convention on the Rights of People with Disabilities (UNCRPD) was ratified in 2018, and the monitoring/advisory body was established by the Irish Human Rights and Equality Commission (IHREC) by the end of that year. Around the same time, Independent Living Movement Ireland (ILMI) launched its #PASNow campaign, urging county councils to vote in favour of legislating the Personal Assistant Service, thus enshrining the right to Independent Living in Irish Law. Most recently, the publication of the National Human Rights Strategy for Disabled People 2025-2030 marks a vital shift in the State’s obligation to treat the barriers to inclusion that disabled people face as serious violations of their human rights.

Legislating for Personal Assistance Services in Ireland is a matter of urgency. Currently, PA hours are distributed, primarily by the HSE, in accordance with perceived need. It is not enough for anyone to be assisted out of bed, often at a time that does not suit the individual, and to be put back into bed at the end of a day. Humans need to feel a sense of purpose, a desire to fulfil their potential, and disabled people are no different. When a disabled person is denied access to the services they want as well as need (because, to paraphrase the great Martin Naughton, we should be able to do what we want as well as what we need),that person is at risk of isolation, of developing mental health problems, of never truly being recognised as an equal in Irish society.

Des Kenny said in Conversations about Activism and Change that while changes for the better are happening, overall, our progression towards equality is painfully slow. I know we have to look at the bigger picture, but I cannot help but feel frustrated that many who have fought battles in the name of achieving equity for disabled people have since passed, far too soon. The National Human Rights Strategy was a monumental achievement for disabled people. Now, our government much work to ensure that the strategy is implemented in our everyday lives. We are worth the investment, in every sense of the word.

As I said, October is a reflective time for me. I’ve now been blogging about disability rights for over eleven years. Am I still going to be writing the same things in another ten years’ time? God, I really hope not.

Friday Freewrites: Back to School

Posted on by
Reply

Alison is exhausted. Between the demands of secondary school and all her extracurricular activities (especially basketball), she is looking forward to having time to unwind and hang out with the many friends she’s made since the end of August. I am so proud of how enthusiastically she has embraced secondary school. She’s going to the Sacred Heart School in Tullamore, my own alma mater, and she wants to be involved in everything from badminton to book club.  It’s no mystery as to why I need to drag her out of bed every morning, typically with the cheesiest song I can find on Spotify playing on full blast on her Alexa. Yet, she hasn’t yet asked for a day off just because; she’s missed school because of a vomiting bug. She wants to be there. Mind you, she’s not buzzing about the homework but, as far as I can make out, she feels like an important part of the school community.

Alas, it took me a little longer to feel that way.

It’s developmentally normal for teenagers to question their parents’ decisions, and at thirteen, I could not work out why my parents would opt to send me to a two-storey Catholic School, when there was a modern, accessible school right next to it. I don’t remember being consulted, and so I already had reservations as I entered through the front door and ambled towards the Dining Hall. I had always attended mainstream education. Throughout primary school, I sat in the classroom with my peers, but truthfully, some of the teachers were softer on me than they should have been. No homework done? Aw, you were tired last night? Don’t worry your little head about it! When my mother found out, she was furious. She and my fourth class teacher joined forces to let me know that being lazy was going to get me nowhere. Honestly, I hated them both, but had they allowed me to drift, I would have had no choice but to drop out of secondary school. And let me tell you, I love them for it now. I shudder to think where I would be now, were it not for their persistence! (Probably sitting at home, pretending to be a writer of some sort. Oh no – wait…)

That said, I spent the first four months of secondary wondering if I was really built for a mainstream education. This was 1997, and Special Needs Assistants (SNAs) were not commonplace. I’d used an electric typewriter for eight years in primary school, but I’d left it behind; they’re heavy beasts, not easily transported, and they are loud! Whenever I typed, it sounded like a mini machine gun. I had an old computer at home, a Sirius – a basic beast with a green screen that had the most basic word processor you could ever imagine – but nothing at school. I remember sitting in class, being afraid to ask teachers for a copy of their notes and praying that I would be able to decipher my own scribbles whenever I got home. I was constantly in trouble for having no legible notes or being late for class. It was a frustrating experience, because I knew I was capable, but I had no way of proving it. That gangly thirteen-year-old could never have imagined applying to study English in Trinity College a short six years later.

The school seemed determined to single me out. At one stage, I wondered if I should wear a cone-shaped hat on my head, just to make sure everyone knew that there was a wobbly alien wandering the halls. Being the only person in a year with over a hundred preteen girls with a visible impairment felt scary. On one hand, I was proud of the effort that I was making to blend in, but the imposter syndrome was on overdrive. I remember that the principal at the time, the lovely Mrs McManamly, organised an occupational therapist to come and do a seating assessment, I was measured up for an orthopaedic chair. With my arms folded, I declared that they were wasting their time as I wasn’t going to use it, so that there was no point in getting one.

Oh no, Mrs Mc winked at me. We’re not just ordering one. We’re ordering one for every class.

Was she serious? Imagine the teasing I’d get while I sat on my specially purchased pink throne, one in every classroom! Anyway, it didn’t make good financial sense for the school. If they were prepared to do that, what would they be expecting from me in return, straight As? When was I going to have fun?

The first (and only, as I begged them not to purchase any more) pink orthopaedic chair came and stayed in Room 22 for six years, the room I used most. Even at that young age, I quickly recognised the difference in my pain levels. Around the same time, in January 1998, following an embarrassing meeting in the CRC with my mother and form teacher (who would ultimately turn out to be one of my favourites, but back then, I was still terrified of her!), I received a basic laptop for school and a Windows ’95 PC, with a special joystick, keyboard and HP Printer for home. I could take my work home on a disc (which, unlike the ones I used with the old Sirius at home, weren’t actually floppy). This was a game changer, not just academically; my classmates were intrigued by the mini laptop, and we started typing notes to each other under the guise of working on assignments. Occasionally, the teacher would cop on to what we were doing, with the embarrassing consequence of having to read out what we’d typed to the rest of the class. No punishment mattered, because we’d laugh about it on the way to the next class. That is how this would-be loner made friends in school.

By the time I was in second year, Dad’s fried/work colleague David had sourced a Windows laptop, which I guarded with my life. At this stage, my classmates were well-versed in carrying my laptop and schoolbag to the next class. While I was grateful for their help, it occurred to me that I didn’t want to be grateful, because it meant that there’d always be a power imbalance between us. Little did I know that good old Mrs Mc had thought of a solution to that, too: an academic assistant, someone to take my laptop and schoolbag from class to class, as well as taking notes and filing them. Now, a big pink chair was one thing, but surely having an actual person following me around all day was going to be a huge obstacle to maintaining any real friendships? She’d probably force me to study all the time and tell the teacher whenever I was passing notes. How wrong I was!

By the time I started third year, I finally found my stride. Caitriona (and from TY onwards, Anne) took me from class to class and took notes. Sometimes they’d sit beside me, usually in classes where I needed their help, while in other classes they would sit at the back and take notes, and both instances allowed me to interact as an equal. Given that neither lady had any formal training, the support that they both gave was top-notch. They never ratted me out when I forgot to do my homework, playing along as we rifled through folders knowing that there were no printouts in them. Their support was invaluable, but I called the shots; I was solely responsible for my own assignments and grades. Later, Caitriona would invigilate my Junior Cert, and Anne my Leaving Cert, offering me some comfort during stressful times.

Once I overcame the embarrassment of needing this assistance, I started to accept myself, and the Sacred Heart played a huge role in my becoming comfortable with my disabled identity. I blagged my way into Transition Year by promising to write a play, and during the summer of 2000, I found to my surprise that I could write a play, because the teachers believed I could. Not only did I write (and later edit) a play, I convinced the teachers to allow me to stage it, and I also helped to produce it. Now, I thought this would make me unpopular in my year and that I would be ostracised for having this privileged position, but surprisingly it had the opposite effect, and I made some loyal friends who stood by me during those tough Leaving Cert years. Because of this, fifth and sixth year were easier, because I no longer felt alone or a burden: I was Simply Sarah.

I shied away from PE, but I threw myself into everything else.  I sharpened my culinary skills. I tried guitar lessons. I went surfing and canoeing in Achill, thanks to Mrs Healy’s support, the same teacher who encouraged me to write “Waiting for Anna”. I did my work experience in the old Tullamore Tribune office on Church Street, which was up a flight of narrow stairs, and forged a working relationship with editor Ger Scully who, even now, always publishes my work if it is good enough. For the first time, I started to contemplate a future that involved real qualifications and a meaningful job, maybe even a career.

Although I found the Leaving Cert years tough going, I still enjoyed school. By now, I felt like I was truly part of a community. Mornings began with Sr Frances in the office, who I loved winding up; the more she advised me to take it easy, the harder I worked, just to annoy her. She often printed out homework from the evening before and filed it (I’d leave my laptop in her office in the evenings after “Afterschool Study” from 4-6 each evening). Whenever I refused her help, she’d call me “stubborn as a mule”, to which I’d bray with laughter. 

What I loved most about school is that the teachers didn’t treat me with kid gloves, and I was punished for forgetting homework, or not knowing my definitions, just like everyone else. I remember the fuzzy feeling of being able to complain with my peers about Ms So-and-So’s bad mood or how much homework we got. Because I was regarded as a swot, my classmates would often request my notes or assignments, and we became experts at committing (tiny) acts of plagiarism. They repaid me in their own notes and by making me laugh, usually during English class, much to the frustration of Ms McKenna. Had I not been such a keen English student, I have no doubt that I would have been expelled!

It’s hard to see when you’re in a fog of adolescent hormones, but I will be forever grateful that I went to the SHS. The career guidance teacher, Mrs Lynch, was instrumental in my decision to go to Trinity and consequently live independently in Dublin, a move that I hadn’t even contemplated to be possible. She also nominated me for a Bank of Ireland Millennium Scholarship which enabled me to live on-campus in Trinity for four years without financial worries, while I read English Studies (well, read when the notion took me). Later, Ms McKenna became an informal source of guidance, and I was so grateful for her time and friendship.

No-one knows what future holds, but I hope Alison’s journey through secondary school will be just as enlightening and fulfilling. Ultimately, though, she has to follow her own path, and I can’t wait to see where this new journey takes her. Hope she has as much fun as I did.

Tuesday Thoughts: Life is But a Dream…

Posted on by
Reply

Getting up at six isn’t easy, but I know I’ll feel better afterwards. While my husband snores beside me after coming home late from work, I pull on the tracksuit that I’ve laid out the night before. I always hate this part, and find myself questioning the auld sanity, but I know I’ll feel better afterwards. I always do.

Down the hall, I can hear the familiar sound of the front door opening, the clinking of my favourite bowl being extracted from the cupboard and the shaking of a cereal box. I look at my watch: 6.30. Right on time. I sit into my wheelchair and go down to my kitchen, where Mary* is waiting for me. She’s poured me exactly a third of a pint glass of orange juice and half a bowl of Bran Flakes, though she’s waited for me before pouring the milk; she knows I don’t like soggy cereal. She also knows I don’t like too much milk. As I munch it down, she clears the breakfast things away, wipes the counter and sweeps the floor. Then it’s 6.45. Time to go.

As always, Mary has started the car so that the windscreen is clear and, of course, so that it’s nice and toasty on this frosty morning. She lowers the ramp and I drive into the car, waiting for Mary to secure the chair with the clamps, just as I’ve trained her to do. Then I’m whisked to Aura, our local gym, for my morning workout session. Mary has sat in on my physio sessions, so she knows exactly what I should be doing. She sets up the equipment for me, making sure that I’m seated correctly so that I don’t strain myself, and so the physical torture begins. Mary laughs, saying that the only weight she’s lifting will be her cup of coffee to her mouth. Too early for this shite, she says.

Afterwards, it’s back to the car and a quick stop at the shop for milk and bread. I give Mary my card so that she doesn’t have to undo the clamps for the sake of a few minutes. She returns with my card, a receipt and the groceries, standard procedure although I’ve trusted her with far more important and delicate things. Then it’s a quarter to eight and back home, where the preteen has just risen. I put on two slices of toast. Mary takes out the plate and the butter. The preteen is unusually chatty today. She’s used to Mary; she knows what Mary’s purpose is, and more importantly, what it is not. Mary never comments on my child’s behaviour. She knows that it’s not her place.

After the child leaves, Mary leaves too. Everything is tidy, meaning that nothing will distract me from my work (apart from my dogs barking at each other, or at random birds flitting past the window). It’s nine o’clock, and I normally have my first thousand words completed by eleven. By that stage, I’m fit to drop, and typically at this time, depending on what household chores await me, I take a forty-five minute nap, just to keep myself right. Then it’s dogs on leads and we go for a short walk, to clear the cobwebs from my brain.

When I return home, Emma* is waiting for me. We cook the evening meal together: she chops the veg and preps the meat, I fry it up. She also cleans as we go, so that we don’t have a big job ahead of us later. My favourite is homecooked lasagne, or chicken stir fry. I’ve taught Emma how to marinade the chicken in garlic and soy sauce. It’s the young’un’s favourite meal.

No two days are the same. Sometimes I might need Emma or Mary to accompany me to Dublin for medical appointments. Other days, I might need help in organising the materials for the Creative Writing Classes that I teach across Laois and Offaly, or the grinds I give to Leaving Cert English Students. We also tour the country a couple of times a month in my accessible van, giving disability awareness training to secondary school students. On those days, a Personal Assistant might have to work longer hours, and so I allow them to take time in lieu on a less busy day to compensate. After all, it is their dedication and attention to detail that allows me to live the life I do, a life entirely of my own choosing.

I jest.

This is not my life. Well, it is and it isn’t. I wish I was motivated enough to get up at six in the morning, but alas, here we are. It’s certainly the one I aspire to, the one I try to fulfil. And, to be fair, I have a good life. I’m married, I have a child, I work as much as I can freelance. And I do have three dedicated, hard-working Personal Assistants, who are always willing to go the extra mile for me. They are simply wonderful people and I love them to bits.

However, I don’t necessarily have a service that offers the freedom and control that I might like. Nor can I choose my own times, owing to the demand on the service. I cannot emphasise enough how dedicated my PAs are, and how much pride they take in their work. It is nothing short of remarkable, considering how exhausted they must be; all of them are required to work with multiple clients on any given day. It takes a special kind of person to remember the preferences of each individual Leader, to try and fulfil somebody’s needs in a limited space of time, and to do all of this with a smile and not a hint of a complaint. For this, I am truly grateful.

That said, this style of service provision does not do the Leader or PA justice. For the Leader, it offers no opportunities of spontaneity and, depending on the nature of their impairment, leaves them at risk of isolation from their communities, especially in this post-covid world where everyone (rightfully) is sick of online meetings, and in-person events are becoming more prevalent. Remember during the height of Covid, when we weren’t “allowed” to meet each other, go for coffees or even take our time looking around the shops? For some disabled people, this continues to be their reality. During lockdown, I found it interesting, and admittedly amusing, to hear that some people couldn’t hack it, and yet for some reason, it’s okay to imprison disabled people in their homes as long as they have access to the internet (or not, as the case may be).

For the PA, this style of work – hopping from client to client – is more lucrative, but exhausting. At the moment, there is little distinction between PA and home help. Typically, a home help is given approximately forty-five minutes to help a client out of bed, get them washed, dressed and have breakfast. Then off that person goes to do the same for somebody else. Home help agencies have high turnover of staff, and it’s not difficult to see why. Often, they might have to drive from one end of the county to the other, just to do an hour’s work. I’ve heard of home helps working twelve-to-fourteen hour shifts, visiting six or seven different people in this time. Six or seven people, with different needs and care plans, who may only be allocated enough time to be washed and fed, if that. What kind of life is that, I ask you? Could you live like that and not lose your brain? A study conducted by Pauline Conroy found that a Leader who is lucky enough to receive a service has a PA for about 45 minutes per day. How is it possible to squeeze a meaningful life into less than an hour a day?

This is why I find myself writing about the same thing over and over again. I’m sick of reading about the “poor, vulnerable disabled people, suffering at the hands of cutbacks.” I know hundreds of disabled people, and I cannot think of a single one that I would classify as “vulnerable.” Those I consider “my tribe”, in the words of artist Mary Duffy, are intelligent, strong, confident, capable and willing to contribute. Willing to fight for the quality of life that they deserve, and always have deserved. Committed to ensuring that the authentic voices of disabled people are heard and taken seriously by the powers that be. But they are also tired. Tired of having to fight for every little thing. Tired of the excuses “there’s no staff”, “we don’t have that kind of money.” Tired of being made to feel guilty for their lack of gratitude: “There’s so many people who don’t have what you do.”

As a collective, disabled people have achieved so much in their lifetime for the advancement of their human rights. But wouldn’t it be lovely to be able to focus on the minutiae of everyday life instead, such as “I want to go for a coffee with friends at one o’clock” or “I think I’ll have a lie-in in the morning”?

Independent Living Movement Ireland (ILMI) are committed to making this a reality. Formerly known as the Center for Independent Living, ILMI have been working since 2018 on their #PASNow Campaign, which calls for the legislation of the Personal Assistant Service (PAS). This would have many benefits. Firstly, it would offer some protection against the savage cutbacks that the service has endured since 2008 onwards, as ideally, the funding for PAS would be ringfenced. Secondly, it would be a step towards recognising that the PA service should be rights-based, not just something given on the basis of an impersonal, medical assessment. This would mean that Ireland could fulfil their obligations under Article 19 of the UNCRPD, which details the right to independent living. Thirdly, and perhaps most significantly, disabled people would be independent of their families and loved ones, absolving them from labels such as “burden” or “object of care”.

On Wednesday, 22 November 2023, ILMI launched their research paper “Not in the Driving Seat: Reliance on family for supports and the impact it has on disabled people.” The reference to “driving seat” comes directly from Martin Naughton, who is internationally recognised as being one of the main figures behind bringing Independent Living to Ireland. The report offers a counternarrative to the traditional spiel of disabled people as vulnerable. The struggles of family carers experiencing burnout has begun to be recognised over the last few years, but this is the first study focusing on the physical and psychological impact that relying on family has on the disabled person themselves. Des Kenny, close friend and ILMI Chairperson notes: “Investment in supports that liberate disabled people will also liberate family members to move from roles where they provide support for their partners, children, or siblings and can focus solely on their family relationships.” I would like to personally commend all involved in this work and to thank ILMI for continuing to push its #PASNow Campaign.

I know I have written about this many times before; this blog might as well be called “The fight for independent living.” And I’m sorry if you’re sick of reading it; trust me, I’m sick of writing it. Yes, we have made great progress in shifting the thinking around disability from pity and oppression to empowerment and rights, but even after thirty-one years, there is still so much to do. It’s tiring, and easy to lose heart, but the only way we can counteract the narrative of pity is to keep pushing our own, in the hope that one day, it will be universally understood. In the hope that one day, in the not-too-distant future, disabled people will have the freedom and choice to do what they want, whenever they want to do it.

*Mary and Emma are entirely fictional, similar to the right to Independent Living in 2023

Personal Assistance Should Be a Right

Posted on by
1

(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

 

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

Posted on by
Reply

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.

Is Activism A Dirty Word?

Posted on by
1

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?

Do I Have a Choice?

Posted on by
Reply

What time do you think you’ll get up tomorrow morning? Now, I don’t mean roughly – can you tell me what time exactly? Can you tell me how long it will take to eat your breakfast? To shower? To get dressed?

How often do you shower? How would you feel about say, one or two showers a week? Could you manage with one or two showers a week?

Do you like to cook your own dinner or would you be happy enough with a random meal from a Meals on Wheels service?

How many times do you go to the toilet? What times? If you go to the toilet overnight, would you be happy enough to lie in a continence pad until a Personal Assistant or Carer comes in to you in the morning, at whatever time they can slot you in?

How many hours and minutes does it take to eat your dinner?

No, friends, I haven’t gone crazy. These are the invasive and ludicrous questions that a person with a disability/disabled person/’Leader’ are forced to answer on a daily basis, in order to access vital services that they need to live independently.

Some time ago, there was something called ‘the philosophy of independent living’, the right for a person with a disability to live life as they saw fit. I remember being told about this philosophy in 2005 by the Father of Independent Living in Ireland, Martin Naughton. He said it was ‘exciting’. He spoke about ‘making mistakes’, ‘learning’ and ‘growing’.

Now, disabled people aren’t allowed to make mistakes in Ireland. There’s safeguarding, risk assessments, care plans. You’re expected to squeeze all your  needs into a time slot, not necessarily of your own choosing. Things that others might take for granted, that a person with a disability might want to do – take up a hobby, go for a chat or a coffee – things that are actually essential in a country that is struggling with mental health issues and rising suicide rates – are now considered luxuries and chances are that in the future, with our growing elderly and disabled population, the HSE will not provide for these anymore.

In 2017, people with disabilities are becoming institutionalised in their own homes, the result of a combination of a lack of accessible transport and a service that reduces people to a list of needs.

Having said that, I’m pretty happy with the service I’m getting, but only because it enables me to do everything I do. I couldn’t dedicate my life to writing and disability activism on a full-time basis were it not for my P.A. service. It’s very difficult to quantify on paper the full benefits of my service, and a tick box exercise would not do it justice. I can write because I’m not exhausted from meal prep; my P.A. helps me with my physio which keeps me in shape. This year alone I’ve done so much in the name of disability activism because of this service. Like so many others out there, I don’t expect something for nothing; I like to think I give back everything I can.

It’s not right to expect people to be happy with just getting up out of bed, maybe going to a day care centre for a few hours, come home again, have dinner and be back in bed by eight. This isn’t living – it’s imprisonment.

And we all know the narrative: money is tight, those who are languishing in various hospitals need to be moved back into their own homes (an estimated three thousand people with disabilities are living, often unnecessarily, in care homes and hospitals), and therefore it’s no longer feasible to provide services like was once provided. Why is the government proposing to spend more money on day care services when there hasn’t been any substantial investment in Personal Assistance in 2008, even though demand for the service is continually increasing?

We are constantly hearing stories on the news about overstretched family carers, a narrative that portrays people with disabilities as burdens. Nobody wants to be a burden, but it is our government, not our needs or impairments, that is making this narrative an unfortunate reality.

I’ve said it time and time again: Ireland needs to ratify the UNCRPD.

I know I’m getting annoying, repetitive. But honestly, I don’t feel I have any other choice.

Because right now, the future for people with disabilities in Ireland looks more grim than ever.

 

 

The Crumbs from the Table

Posted on by
2

Hey guys, guess what today’s ranty blog is going to be about? *fanfare* You’ve guessed it – the farce otherwise known as Budget 2018, which was released earlier today (10 October). Though you know what, I’m not actually surprised at how little it helps ‘our people’ (aka us crip-folk) and you know why?

Because the UNCRPD (United Nations Convention on the Rights of People With Disabilities) hasn’t been ratified yet! What’s that got to do with the price of eggs, you may well ask (or not, maybe you don’t give a shite). Well, I’ll tell you, shall I? As long as the Convention remains unratified, disabled people are at the very least being denied the rhetoric to challenge the discrimination and sometimes the cruel and inhumane torture doled out to them on a daily basis!

Our government continually makes excuses for the delay in the ratification of this UN Convention, allowing them to blatantly disregard the human rights violations that are occurring in the meantime. For example, Article 19 of the UNCRPD states:

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) 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;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

If the Convention was ratified, then the government would have to justify why there are currently over one thousand young people with disabilities and an estimated three thousand disabled people in total inappropriately placed in nursing homes. It would have to explain why funding for Personal Assistance is allocated to the HSE who in recent years, owing to financial constraints, have been awarding the service on the basis of absolute need – in their eyes, accessing work/college, personal care and physio. Gone are the days where a person with a disability could be trusted to be accountable for their own decisions. Instead, a lack of funding has resulted in service users (‘Leaders’) having to justify and account for every minute of their P.A. service. Personal Care trumps all. As long as we’re up and dressed, it doesn’t seem to matter whether or not we can actually go anywhere! This is how people become institutionalised in their own homes, a common problem that is rarely discussed.

There has been no additional funding in this area since 2008, but there has been increased demand for services. As a result, many people are on waiting lists for P.A. hours, some of whom are stuck in hospitals and nursing homes in the meantime. Some of these people are well able to contribute to society, so why aren’t we letting them?

Under Article 15, which states ‘Freedom from torture or cruel, inhuman or degrading treatment or punishment’, Ireland has a lot to answer for. We’d all be naïve if we thought that Aras Attracta was the only serious incidence of cruelty toward disabled people in congregated settings. HIQA, though useful, is very clinical in its approach and the danger is that it may be merely ‘a tick-box exercise’ which doesn’t actually measure the happiness of residents. I have yet to see a HIQA report that recommends that some residents (or most, but not all – I appreciate that) would greater benefit from being accommodated to live in the wider community with support.

If HIQA decide in the future to regulate community services, then they must do so with Independent Living and its components of independence, empowerment, choice, options and rights as the core of their policies. Our government needs to realise that the ratification of the UNCRPD (whatever this entails) must shift the disability narrative from one of charity to  one of empowerment. We don’t want to have to be grateful for government handouts, but we are never going to be able to contribute to society in a meaningful way unless we’re enabled to do so. And this must happen through investments in the services we choose.

We want rights, not charity.

We want all the cuts made to disability services reversed, as well as additional investments. Because after today’s budget, people with disabilities are no better off than they were ten  years ago.

I’m sorry, but the crumbs from the table just aren’t good enough anymore.

 

 

 

My Dystopian Life

Posted on by
1

Guys, this evening as I sit here on my laptop, I’m starting to seriously doubt myself. When I started writing a novel two years ago now, I didn’t have a clue what I was doing or how to plan it out. And man – now it’s a mess. I can still see merit in the story, and I am a hundred percent sure what I wanted to achieve. But another story has beckoned over the last number of months, and it’s a dark, dystopian fiction (but kind of similar to the one I’m writing now in many ways).

In my fourth year of college I was introduced to the world of dystopian fiction by a professor who urged us to  read the novels and afterwards to question everything, to draw similarities between the fictional work and real life. After all, dystopian novels draw from our history. Look at 1984, for example. The use of propaganda (I.e. Hitler) to brainwash the public into trusting the ‘government’, the deliberate rewriting of history to suit a warped political agenda, the destruction of language so that the ‘proles’ have no means of expressing anger towards the Big Brother regime (any of this ringing a bell? Tuam Babies? Garda Corruption?) These are all ways in which people are worn down and forced into a narrative they do not want to partake in. And of course, rebellious Winston is forced into Room 101, where he is tortured into submission when faced with his darkest fear: rats.

Watching the television adaptation of Margaret Atwood’s dystopian novel The Handmaid’s Tale has reawakened my fascination with the dystopian form, and it’s interesting to watch my husband’s outraged reaction to the show every Sunday and to point out to him, just as we did in Apocalypse Class ten years ago, the similarities between Gilead and the world we live in now. Of course, we don’t live in the nightmarish worlds of these two novels. But I definitely feel trapped in some kind of dystopian nightmare.

I live in a country that is deliberately denying me my human rights, in a world where I constantly have to prove myself in order to have any kind of credibility. A world in which disability is seen as a medical problem rather than a social one. A world where my voice and the voice of many disabled people are dismissed as trivial or unimportant. The problem is that speaking openly and honestly about disability isn’t seen as ‘cool’ or interesting unless your views are endorsed by some random celebrity or politician, who has no idea what it’s like to be viewed as an inconvenience by your own government.

I believe in something called the philosophy of Independent Living. It was originally an American concept, its birth coinciding with other major political movements originating in the US in the 1960s. Basically, many people, including disabled people, were sick to death of being discriminated against and denied their basic human rights. And so they fought. They protested. Above all, they made it quite clear that the only real authority on the subject of disability were disabled people themselves.

Fast-forward almost sixty years, and what’s changed? Sure, things have improved. Access has improved. Disabled people even have careers and families now. But don’t be fooled: these things haven’t and still don’t come easy. We still have to fight, fight, fight.

But what’s the alternative to fighting? What would happen if disabled people sat back and said ‘sure what’s the point? What can we do?’ Well, I’ll paint you a picture, shall I?

If we continue to allow organisations to represent us instead of us representing ourselves, sooner or later we won’t be trusted in our own opinions at all. We won’t ever challenge ourselves and we will become complacent, so much so that we won’t even notice our human rights being stripped away, one by one.

If we don’t actively promote the social model of disability and be adamant and unwavering in our belief that it’s the society we live in that’s the problem, we will always be seen as patients to be improved, fixed or cured, and future generations will fail to acknowledge that there’s nothing wrong with us.

Today, across Ireland, so many disabled people in Ireland do not get a say in what time to get out of bed, when to eat dinner or where they live. Many are stuck in hospitals or in their parents’ homes where they have no control over many aspects of their lives. This is not okay. Please don’t shrug your shoulders and say ‘oh well that’s just the way it is at the moment, what can we do?’

Imagine if you had to justify every single little decision in order to be able to do what you wanted.

Imagine having to prove yourself every single day in everything you do, and be expected to do so with a smile.

Imagine having to downplay your abilities, almost to the point of degradation, and having to expose your vulnerabilities before getting the basic help you need to live independently.

This isn’t a dystopian novel. This is Ireland, right now.

And for many, it’s a scarier place than any fictional dystopian world ever created.

 

National Carer’s Week 12-18 June

Posted on by
Reply

This week  (12-18 June) marks National Carer’s Week, which is an initiative designed to give recognition to the estimated 180,000 unpaid carers across the country. These people are hailed – and rightly so – as heroic. Many carers have given up dreams of marriage, having a career, maybe juggling caring with raising a family. It’s noble and admirable, yet I find something deeply troubling about the narrative surrounding carers in Ireland.

I probably don’t have any right to be writing this blog.  I’m lucky insofar as my care plan doesn’t currently involve intimate personal care, just help with things like tying up hair, doing buttons etc. I mentioned before that one of the things I value most is my independence. That, and not being labelled a burden.

As a mother of one little girl, I’m ready to plop myself on the couch by eight o’clock in the evening. I love being a mother more than I ever thought I could, but sometimes it can be exhausting – answering incessant questions, doing role plays, going to the park. And this is without having to take care of toileting needs, inserting feeding tubes or anything like that. BUT I would hate to be in that dangerous position where I would view my own daughter more as an object of care than her own little person.

Traditionally, when a disabled person has a child, it is often assumed that the child will take on the role of a carer. Well, let me tell you – Alison has her little chores for which she gets rewarded, but she is not a carer. I have an excellent personal assistant service (not carers) that enables me to be the best mother I can be. I myself direct the Personal Assistant in what I need, and doing so allows me the energy during the day to write pointless blogs like these and spend some quality time with my daughter in the evening. And it allows my husband to enjoy an existence separate from me. I don’t have to worry about him harbouring resentment for me, because I’m not completely dependent on him. We are very much an average husband and wife.

It is harmful to reduce the identity of a person who has ‘high-dependency needs’ to an object of care. Everyone has the right to personal autonomy, to choose how and where they spend their day and with who. I know if I had ‘high dependency needs’ I wouldn’t want my parents, my husband or my child caring for me. I’d want someone fresh, not so emotionally involved, someone who could appreciate my individuality as well as know how to meet my needs. These sort of people are hard to come by. A FETAC Level 5 in Healthcare Support is useful from a practical point of view, but there is a danger that service provision is becoming overmedicalised, with less emphasis on finding out what the person actually wants and more about ticking boxes and providing a basic care plan and often wholly inadequate service.

If this government really cared about the needs of disabled people and their carers, then they wouldn’t dare contemplate cutting the Personal Assistant Hours or the hard-to-come-by Respite Grant. Instead of having a tokenistic approach to unpaid carers by dedicating a measly week to them, the government could alleviate the workload of carers by looking after the needs of the disabled person themselves and, as the late Martin Naughton suggested, allocating them funds so that they (and their families if appropriate) can choose the services they need. Martin called this putting disabled people ‘in the driving seat of their own lives’.

I’ve spoken to people over the last number of years who regard the possibility of acquiring a disability or impairment as ‘a fate worse than death’ and who, like me, would hate to become a burden on their families. But this attitude is a dangerous one. Centuries of conditioning has led us to believe that it’s our impairment that is the problem, and it’s not. It’s the manner in which Irish society and our healthcare system are constructed to make disabled people feel like they’re somehow ‘wrong’, problematic, inconvenient. We are now the only EU member state that hasn’t ratified the UNCRPD. In the UK, disabled people who cannot work are labelled ‘scroungers’ and I can see that attitude creeping in here now. I now believe that positive change is not progressive, and can be undone more quickly than it happened in the first place.

To all of you unpaid carers across the country: I salute you, and keep up the good work. You deserve recognition, not only this week, but every single day. But can I ask a favour? Please join us in challenging the system. Please don’t resent your loved ones for the care they need. They are not at fault. All of our lives would be so much easier if the dignity of disabled people and their carers were upheld through the provision of basic human rights.