Tag Archives: Accessibility

Tuesday Thoughts – Budget 2025: A Reflection

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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.

Tuesday Thoughts: A Reflection of “In Their Names In Our Time” Eight Years On

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The date 23rd September 2017 will always be etched in my memory as the day that disabled people in Ireland came together to push back against the injustice that we’d collectively endured as a collective since the onset of the recession. On that chilly September day, over two hundred people came together in the Mansion House, a year after the centenary marking the Easter Rising in 1916, to celebrate the lives of seven late disability activists who had made notable contributions to the advancement of Independent Living and equal rights for disabled people in Ireland. Their names were Martin Naughton, Joe T. Mooney, Ursula Hegarty, Florence Dougall, Michael Corbett, Dermot Walsh and Donal Toolan. Although these people were singled out, there were many activists from across the country whose contributions were recognised in conversations held between attendees on the day; far too many to list here.

When Martin died on 13th October 2016, a collective of disabled people came together to create a space to celebrate his work and legacy. What became obvious in the planning process of the event was that we needed to reinvigorate people and the Independent Living Movement as a whole. In the barren landscape of post-recession Ireland, where vital services had been attacked and whittled down to almost nothing by the very people who promised to protect them, disabled people were hungry for change, and were adamant that they had a duty to honour these seven activists’ legacy by fighting for it.

On 23rd October 2016, as I sat in Carmichael House, where the first Center for Independent Living had been established twenty-four years beforehand, I pondered on how I could contribute to the continuation of this important disability movement. It had been a year since I’d last been employed by Offaly Centre for Independent Living, and I’d departed from the job with a sparse skill set; apart from a successful Fashion show which sported the diversity within our local community, I’d only ever organised a smattering of coffee mornings and movie afternoons. I wanted to be a writer, and so I volunteered to establish a blog to collect memories and stories about the early days of the movement. Doing so gave me the confidence to help with the admin of the event. For the first time in a long time, I felt valued and useful, and it was an amazing feeling.

I was invested in this project. My peers were trusting me and were generous with their advice. I started talking to and texting people I’d never spoken to before, especially John Doyle and Shelly Gaynor. John fed me titbits of Independent Living history, things I didn’t know before, because there was no record of an Irish disability movement. Shelly was a grounding force. She was the voice of reason and could easily distinguish between the achievable and the impossible. And Eileen Daly became a firm friend, trying to arrange meetings to accommodate my participation. Ultimately, however, I ended up recruiting a babysitter for Alison as the organisation of the event became like a full-time job.

There was a lot of talk around the event, positive and negative. Mistakes were made, many of which I’d take back in a heartbeat, and certainly would not repeat. Organising an event of this magnitude was a giant learning curve. That’s the essence of Independent Living, and learned from each other. Alliances and lasting friendships were formed. Ultimately, disabled activists from across the country rowed in behind us, knowing that although the process wasn’t perfect, we were trying our best. We were reluctant to make promises about how the event would go. I felt we were under an enormous amount of pressure. Everyone was looking for the same thing: a feeling of solidarity and camaraderie; yet each of us were also bring personal hopes and expectations to the table.

Finally, the day itself came. I remember waking up with a pain in my stomach. I remember doing my best to greet everyone I knew and introduce myself to anyone I didn’t. As a writer, I’m used to working alone, but meeting two hundred people in one day was another level of overwhelm. In an act of bravery or stupidity, I’d offered to write and perform a monologue highlighting the dangers of internalised oppression; we cannot allow our own self-limiting beliefs to hold us back. I’d never performed on stage before, and the subject of the monologue I’d written with Peter Kearns – a disabled mother led to believe that she was incapable of caring for her own baby – was still painful and raw, five years later.  Thankfully, my acting debut was well-received, though minutes later, Peter Kearns found me puking in the toilets. (“Does it get easier?” I asked him. “God, no,” he laughed as he beheld my ashen face.)

The event was picked up by RTE News, which was great publicity, but the purpose of the event was more nuanced than was reported. We came together as a collective to mourn and remember, but also to regroup. We needed that event to remind ourselves of our own strengths. That we did not deserve the inhumane treatment that was doled out to us in the name of saving government money. A reminder that no matter how much is in the government pot, we are entitled to our rights and services that enable us to be independent must be secured and underpinned by a rights-based approach.

Eight years have passed now, and changes have been made. Independent Living Movement Ireland (ILMI) is now officially recognised as a Disabled Persons’ Organisation (a DPO), representing the views of disabled people across the country. ILMI are supporting the establishment of local DPOs, encouraging people to fight for their rights and vocalise their concerns. 

In addition, ILMI is leading the way in pushing back against language that victimises or infantilises disabled people. And just last week saw the publication of the National Human Rights Strategy for Disabled People 2025-2030, a historic moment as this has been the first strategy to consult with disabled people and DPOs throughout its compilation. This gives me hope that perhaps, one day, disabled people might gather in the Mansion House to celebrate rights, freedom of choice, and being truly treated as independent citizens of Ireland, just as those gone before us fought for.

I will forever be proud of taking part in this event, and will always use it as a benchmark for what is possible, because really, anything is, when we work together.

Tuesday Thoughts: Pain in the Ass

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(aka JP’s affectionate term for me. Just kidding)

 (This post was inspired by Julie Helen’s column about her quest for a new wheelchair. I strongly encourage you to read her weekly column on EchoLive, where she writes about a wide variety of topics from a personal perspective.)

It was the weekend of my mother’s fifteenth anniversary that I discovered the letter in my postbox outside, and I took this as a sign. I opened it excitedly, knowing exactly what it was. At last, after fighting for the guts of three years, I had an appointment to administer a pain injection into the buttock of my right leg. This couldn’t come at a better time. The appointment was for Friday, 7 June 2024, and we were due to go to Australia on 1 July. I shivered in excitement at the thought of running around after my sister Alex’s little ones, Cathal and Grace, playing with them on the floor. For the first time in four years, I might sleep for more than two hours straight! Imagine waking up refreshed! Thus, I’d have more energy to write, and do courses, maybe even start cycling on the trike again (I do 2/3 45 minutes sessions on the exercise bike a week, but it’s not the same). 

As the day drew nearer, I did an extra physio session every day, as I dreamt about my pain-free life, smiling as I imagined folding up the wheelchair and throwing it into the spare room. I was tired, but I didn’t care. All of my hard work would be worth it when I was back wobbling around the place.

I don’t know what I was expecting from a little pain injection but suffice to say I will never know. Friday, 7 June was a sunny morning, and I beamed broadly as JP drove us up the M50 towards Tallaght. It seemed the universe was working in my favour; there was hardly any traffic, we didn’t miss our turn-off, and we were parking outside Tallaght University Hospital at 9.15am for our 10am appointment. JP was excited too; I’m sure I wake him often, tossing and turning all night. We found our waiting area quickly, and at 10.20am my name was called. When we reached the room, everything was waiting: the team of doctors, the ultrasound machine, the bed covered in tissue. It was a moment of triumph. I’d been fighting for this moment since November 2022, when they told me that there was nothing they could do for me. And now my recovery was about to start at last.

I was helped onto the bed and a team of doctors carefully pulled down my trousers and started the scan. Suddenly, one of the doctors asked for the head of department to come down. Apparently, even though I maintained that he was rubbing his scanner over the painful area, they couldn’t see my sciatic nerve. Now, I’m crap at biology – my Junior Cert teacher regularly read out my test answers to entertain the rest of the class for the comedy effect – but I do know the sciatic nerve is the main nerve, and if they couldn’t find it, I wasn’t sure I wanted them anywhere near my ass with a needle. 

 I was asked to sit up and I was helped back into my wheelchair. I tried to act like a professional patient, but I couldn’t stop the stinging tears rolling down my face. Your injury is probably just a contusion, they told me. You couldn’t stay still enough for the scan, and we can’t really see any damage. We’re sorry.

This has gone on for four years, I said. So you’re saying this pain is all in my head?

No, no, of course not. We’re saying there’s no silver bullet (Martin Naughton might say “No Magic Pill.”) Keep up the physio, painkillers, TENS etc. Pain management must be a priority in the long term.

Dammit. They warned me that would happen, but I’d pushed for the injection anyway. I have never felt more stupid. Driving home in the car, I saw my fantasy of getting my twenty-year-old body back disappear. More importantly, my dream of walking around Australia on my holidays vanished into thin air.

I never used a wheelchair in my life until I was nineteen years old. Day after day, I pushed through pain and tiredness as I trudged around the Sacred Heart School, going up and down stairs, navigating through the crowd. This was on top of cycling to and from school, every day, for six years. I was pretty darn proud of myself, I won’t lie. I developed an irritating superiority complex where I thought I was better than other disabled people. I was integrating myself like a fridge into a kitchen, becoming invisible in the process.

I have never felt more valuable as I did in my younger days, and now I can see how problematic that is. I’ve written before about my experience of internalised oppression, and even at the ripe age of forty, I struggle to shake it completely. The truth is, I am ashamed of how my mobility has deteriorated. I tend to view it as a personal failure to push myself, to take care of myself, rather than the result of years of trying to make my body do things it’s not designed to do. Sure, I made a choice to use a wheelchair so that I could have energy to write these blogs and hopefully, with Ali in secondary school now, re-enter the workforce and get involved again with the Independent Living Movement. I know the reasoning behind my decision was sound, and yet I haven’t fully dismantled the years of internalised oppression, so let’s face it – I’m an awful hypocrite.

The realisation that I wouldn’t be walking around by the time we went to Australia hit home like a sledgehammer. However, when we stayed with my baby sister in Australia this summer, I was determined to show her that I was still the same active rogue I’d always been. She’d sourced a steel walking frame from her neighbour Dell, and not having the heart to explain that I don’t really walk too far anymore, I accepted it with a grateful smile, while loading up on painkillers. For the first week or two of the holiday, I hobbled around the house, knowing what I wanted to do, but too ashamed to say anything. The second weekend we were in Oz, we all took a road trip up to Jurien Bay. Our accommodation was accessible, so I could use my wheelchair the entire weekend. 

When we got back to my sister’s house in Clarkson, without prompting or any pre-discussion, my sister Alex greeted me at the car door with my manual wheelchair. No words, no “I know you need this”, not even “I think this is a good idea.” That evening, I set the table, unloaded the dishwasher and hoovered, and I know my sister was struck by the difference in my independence and energy levels.  Not having to pretend was a relief for both of us, and I was surprised by how easily she accepted my need to use the chair – without question. She didn’t say she was sad, or disappointed, or ashamed – that was purely the narrative I’d woven in my own head, a stick I was using to beat myself up with. 

It got me thinking about the wider issues of equality and acceptance which, if you’ve read any of my other blogs, you’ll have gathered is something that I’m passionate about. But how can I expect other people to subscribe to the idea that disability is located outside the self, if I don’t? If I continue to connect my self-worth to my body’s ability to adapt within a society which, directly or otherwise, serves to exclude me, my self-esteem will plummet through the floor! More pertinently, I am handing the systems that discriminate against me a viable excuse to do so, on a silver platter. And whether I like it or not, I am not just an “I”. I am a “we”, a part of a wider collective trying to change attitudes and remove barriers, something I will not be able to do until I change my own attitude towards myself and accept myself in all its wobbly entirety.

Being underemployed at the moment, I cancelled a load of my subscriptions, but one I held onto was an affirmation app, which sends me random affirmations during the day. I admit I don’t always read them when my phone pings, but this morning I just happened to flick through them on my watch, as I sat on the toilet. “I am allowed to take up space,” “It is okay to have a hard day,” “I am patient with myself”, and “I have the motivation to create change,”” are just snippets of the messages that come through hourly. We need to change the messages that we as Disabled People are absorbing and, consequently, sending back out into the world. Most importantly, we need to change the stories we tell ourselves, about ourselves.

I often feel like a right pain in the ass when I write this kind of blog, but this – along with other authentic voices of Disabled People – is the only way to change the narrative around disability, for ourselves as well as within wider society. When we take control of the narrative, we can write our own endings, hopefully depicting a fairer world of acceptance and inclusion.