Category Archives: Accessibility

Tuesday Thoughts: Hip Hip Hooray!

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It was during the first Covid lockdown in 2020 when I, like everyone else in the country, decided that I would step up my fitness regime. I started using the treadmill every day, and I ordered the most beautiful looking mountain tricycle from trikes.ie. As time passed, I felt frustrated that I didn’t seem to be getting any fitter. The more I walked and cycled, the more pain I was experiencing in my right leg. Admittedly, I didn’t think much of it at the time. I just put it down to not having cycled properly in years, maybe being a bit rusty. Then in September 2020, I fell backwards while crushing some plastic bottles under my foot for the recycle bin.

For nearly five years, I thought that this was the moment that changed everything dramatically, for the worst. Now, it seems it may have happened long before this, and I didn’t realise it.

As a wobbly walker, I fall over so often that it’s rare that I remember it. My body sports cuts and bruises that I don’t recall acquiring, never mind how I got them. A few weeks after this fall, I realised that the pain wasn’t subsiding, and that it was going up and down my leg. Sometimes, my knee felt like it was giving way below me. Other times, it felt like a trapped nerve. That was the diagnosis the physiotherapist gave me in July 2021: that it was periformis syndrome. Being me, I googled it, and learned that it should ease within a few weeks, provided I adhered to a religious physio regime.

It didn’t ease. In fact, it got worse, and soon I was getting no more than two hours’ sleep a night. The doctor referred me to Tallaght, but the specialist there couldn’t identify the source of the problem. One doctor prodded me in the back, and because I jumped, agreed with the physio that it must be periformis syndrome and nothing could be done, unless…. It was at this stage that I heard the words “pain injection” for the first time. However, getting a steroid injection into your periformis is a risky procedure with no room for error. I didn’t care. This was the end of 2022. I was sent home and was told that they couldn’t find anything wrong.

In July 2021, I was offered the opportunity of a lifetime – I won a place on the Play It Forward Programme, an initiative headed by Skein Press, The Stinging Fly, the Arts Council, and, in my case, Independent Living Movement Ireland through a bequeathment from founding member of the original Center for Independent Living, Declan O’Keeffe. I’d never met Declan, but I felt that I owed him the decency of making the most of this opportunity. Meanwhile, the pain would not abate. I lay awake every night, trying to get comfortable and wondering where I’d gone wrong, both with my body and with my career. I had a fantastic mentor, the talented David Butler, but I just couldn’t manage to put in the work required to complete my novel. Ideally, the end product of the Play It Forward programme for me would have been a bestselling debut, but obviously this wasn’t the case.

Every day, I scolded myself for wasting such a wonderful opportunity. I didn’t make the most of it, and it is only now that I accept that this was because I couldn’t, not because of laziness. I considered emailing everyone involved in my bursary award and apoIogising for squandering their money, but I knew that emotion was clouding my judgement. Instead, I went to the doctor and told her that I was having non-stop pain and depressive thoughts. The doctor explained that sometimes mental illnesses can manifest in physical ways. I wanted to scream. 

This was January 2024. I had been in a depression spiral since September 2023. I was exhausted and paralysed by a pervasive sense of failure. I didn’t recognise myself. I withdrew from disability activism. I got some proofreading and editing jobs during this time, but not enough to earn a living. I stopped texting and calling friends, though some particular friends refused to be pushed away. The week before my daughter’s confirmation, I went to my doctor and told her that I was having dark thoughts and that I didn’t think I could carry on. She prescribed Sertraline, which I never took.

I never took it because I knew that it was the pain that was messing with my head. It was ruining my life. All I seemed to do was complain, and I was so sick of it.  As I grew more tired, I felt more useless, like I was a burden on those who loved me. I was too tired during the day to write, or to find work, or do anything other than scroll or watch nonsense on YouTube. Taskmaster became my comfort blanket. This is coming from someone who once would rather read or listen to radio or do anything other than sit and watch a TV programme.

In February 2024, still on a crusade for answers, I went to Neurology in Naas hospital, where the doctor there again gave me hope that I could get a pain injection into the periformis and made a referral to have it done.  I should point out that, at this stage, I’d only had a back x-ray, which showed up no abnormalities. We were planning on going to Australia in July 2024, and I wanted desperately to be able to enjoy it pain free. Unfortunately, that wasn’t to be, as I’ve written before. On 7 June 2024, we travelled to Tallaght and I was all ready for my injection, only to be told (a) that they couldn’t find my sciatic nerve, or any sign of damage, on the scan and (b) that they thought my pain was likely the result of a “contusion”.


i.e. That they thought it was impact pain from the fall, that I’d had four years previous.

Are. You. Fucking. Kidding. Me.

I really thought I was going mad. We went to Australia, and I relied heavily on painkillers and my TENS machine to get me through the trip. I couldn’t even walk around my sister’s bungalow; I needed the manual chair. I was so tired and frustrated. When we came home, I slid back into the Netflix binges, completely exhausted. Was this my life now, at the age of forty? No job, no prospects, a life overshadowed by tiredness and pain? What was the point of getting (two) university qualifications, and all those writing courses I’d done since 2014, if I couldn’t use them to build a career?

In January 2025, I rejoined Writer’s Ink, an online writers group spearheaded by bestselling author Sam Blake (Vanessa Fox O’Loughlin) and coaching guru Maria McHale, and I revisited my novel, once again fantasising about how the world needs to hear Rachel’s story. At first, things went well. I did a prompt exercise every day and before long I was discussing my would-be novel with literary agent, Simon Trewin, who seemed impressed. However, by April, I was exhausted again, struggling to get to the end of the day. Another frustrated visit to the doctor, another set of blood tests that showed everything was normal.

“Come back in,” the doctor said. “We need to get to the bottom of this.”

She was taking me seriously, possibly sick of my constant complaining. She brought up my files, and we went through the absolute shitshow that has been the last five years, going through the letters from the consultants, the lack of findings. Suddenly, she frowned at the screen.

“You’ve had a back x-ray. Have they ever x-rayed your hip?”

My hip? No.

“Okay, let’s do that next.”

I duly attended the  “urgent” x-ray appointment, feeling I was wasting my time. A couple of days later, my doctor’s number flashed across the screen.

“It’s your hip.” She was excited. “Significant arthritis. It’s very shallow, by all accounts. I’d say you’re looking at a replacement.”

This was the 22nd April of this year. Nearly five years of looking for answers. And although it didn’t feel like it at the time, it was possibly the best birthday present I’d ever been given. I wasn’t going mad. I wasn’t a hypochondriac. I was suffering – and I use this word deliberately – from arthritis. Five years on, I finally had an answer.

Since that phone call, my life has changed so much. I now go easier on myself, knowing that I will have good days and bad. Not only am I paying more attention to my body, I know what exercises I have to do, how to look after myself properly. In June, once the reality of what lies ahead sunk in, I went back to the doctor to discuss my long-term options.

I need to be a good mum and wife. I need to get back to work. What way should we approach this?

She arranged an urgent appointment with an orthopaedic surgeon. When the appointment came in, my husband and I were stunned.

“Surgery,” he said. “That’s where we are now, and what you’ve fought for.”

I dismissed his words with a wave of my hand. “It won’t come to that.”

My dear reader, as it turns out, it may well come to that. On 4th September 2025, I foolishly attended the appointment alone, reasoning that I would be perceived more capable and confident if I asked the questions. And I was right, but the news landed like a lead brick. After half an hour’s discussion with the surgeon, during which he went through my symptoms and x-ray in detail, he handed me a leaflet – What You Should Know About Hip Replacements.

He said that although wear and tear might be a factor, my hip has possibly always been shallow and that many people (not just wobblies) have it and only discover that they have it when it plays up in their forties. He said that he has replaced the hips of at least four CPers. Best of all, he said that he would attempt a pain injection into my hip. Not just to give me relief, but also as confirmation that the hip was the cause of my pain, before cutting me open.

“Oh God,” I said. “Don’t dangle the dream. I’ve been here before.” I explained my journey so far, but he was confident he’d be able to do it.

He was right.

On Friday 17th October, with the help of an amazing medical team, I finally received a pain injection into my hip. It was relatively straightforward: I lay still enough, and the procedure took ten minutes. I burst into tears, because I felt so proud of myself for not giving up and persisting in finding the answers. I won’t know for sure until the end of the week if it has worked, but I do feel some relief already. I’ve had four good nights’ sleep – apparently, I didn’t hear Rupert barking the other night, which feels wrong – I always am the one to hear him and let him out. Last night, I was doing a crossword puzzle in bed, and I sat with my knees up and the book resting on them. John Paul remarked that I haven’t sat like that in years. Today is Tuesday, and I feel exhausted, five years of sleepless nights catching up on me. But I’m not in pain. It feels like being on holiday from my own body.

I know I shouldn’t get too excited. After all, it’s still early days and this injection mightn’t work long-term. And if I do need a replacement, recovery will be long and arduous. But for the first time in a long time, I feel hopeful that I can get back to myself and to who I was before all of this started. 

I suppose I’m sharing this for two reasons. First, to apologise to the many people I’ve lost track of in the last five years, and to offer an explanation – not an excuse. Second, to give anyone who finds themselves in the same position some hope. I believe you. Please don’t stop looking for answers. I offer you love and light xx

Eight Things I’ve Learned About Chronic Pain

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Religious followers of this blog will know that I’ve experienced chronic pain in my sciatic area for the last five years. I noticed it after a particularly nasty fall in the back garden in 2020 but only became concerned when, six months after the fall, the pain hadn’t subsided. Since then, it’s been a rollercoaster of medical appointments, of being told it was sciatica, muscle spasms, periformis syndrome and many other things. And, of course, one medic had the gall to suggest I was imagining it, that it couldn’t possibly be as bad as I was saying (apparently, I like lying in bed every night, doing stretches at half three in the morning for the craic.)

My birthday was in April, and to celebrate I was gifted an unexpected diagnosis. After years of plaguing her, my doctor, who believed me from day one, ordered a hip x-ray. Now, I wasn’t expecting anything to come of it, but three days later, she phoned me to say that there was significant wear and tear in my right hip, and that the results could pinpoint exactly what’s causing the pain. At first, I was stunned, and a little annoyed with myself. Had I done this to myself? Since then, I’ve spoken to so many people who have arthritis too, and the majority of them struggle to articulate just how debilitating this pain can be.

Having Cerebral Palsy is not a big deal, because I’ve never not had it. However, as I get older, I find that I have aches and niggles I’ve never had before. Adapting to having CP comes naturally, as there’s never been a time when I didn’t have it, but chronic pain, although it’s kind of connected to the CP, has been a bit more of a learning curve. Here’s what I’ve learned about having this new CP (although a Google search told me some of the same things, I’m more into learning the hard way).

  1. Chronic Pain is not your fault:

    Admittedly, I naturally walk with my leg turned in, but despite appearances, I do try to walk as straight as I can. It took me a long time to acknowledge and recognise that chronic pain is not a punishment, and that being hard on myself was not going to change it. Sometimes you can do everything right and still end up in pain. This leads me to my second point…

  2. Physical pain can lead to crappy mental health:

    Being in pain is exhausting. I’ve finally succumbed to taking pain medication at night so that I can sleep, but on days where I’m in pain and tired from a poor night’s sleep, the world becomes a dark place. Even the simplest tasks become laborious and time-consuming. Your brain lies to you, telling you that you are useless, a burden. This can lead to feelings of failure and inadequacy. Therefore –

  3. Pain management must come first in your priorities:

    It doesn’t matter how busy you think you are. If you skip the physio, neglect to slap on the TENS machine or push through without the medication, chances are you won’t be able to do what you need to do anyway. In order to be your best self, you need to take control over your pain management. Eat well, drink your water, and rest when you need to.

  4. Pacing is not a dirty word:

    I continually fight this one. After all, we live in a society where “being busy” is seen as a badge of honour. I tend to get overexcited when I have a pain-free day, and I run around the house like a lunatic, scrubbing bathrooms and hoovering only to be left in agony for days after. I think what you’re supposed to do is prioritise tasks and do them at your own pace, with plenty of rest in between. I’ll keep working on it!

  5. Pain can be lonely:

    Most of us don’t want to be seen to constantly complain. As a result, I often find myself withdrawing from activities and meetings that I once enjoyed. I don’t like telling the same story, over and over. Sometimes, I don’t have the energy to be social, and I end up watching Netflix in binges when I could be meeting people out of the house, and this only heightens my inner shame and sense of failure. However, it’s also important to remember –

  6. You are not alone:

    When I eventually found the courage to talk about the impact that being in pain was having on my physical and mental health, I was surprised to hear that so many of my friends were also wrestling with pain, and as long as I don’t fall into a pit of self-pity, I can support and be supported by those who love me most. Many people experience chronic pain, with diagnoses like fibromyalgia. Sometimes people are not believed, but this experience does not make your pain any less real. Thousands of people are in the same boat – take some comfort in this.

  7. A bad day does not mean a bad life:

    I’m having a bad day today; I cannot shake the tiredness and this is slowing me down. It’s frustrating, especially since, in my mind at least, I have nothing to be tired about; no job to go to (hoping that will change soon), no toddlers, and not nearly as much writing being done as I’d like. However, I must admit that I have good days too, especially those spent with family and friends, and that overall, I’ve achieved a lot. Parenting a teenager is not for the faint hearted!

  8. Wheelchairs and walking aids have no moral value:

    Over the years, I’ve heard people saying that they want to be able to walk without aids. My thing is that I’d like to walk more with my rollator, as I did before my hip started giving me trouble. Some days I manage, and some days I can barely stand. My pain and energy levels vary. What doesn’t vary are my duties as wife, mother, and writer. I do get some invaluable help, but overall, meals still need cooked, laundry done, dogs walked. My wheelchair enables me to carry out these duties. I am not lazy; in fact, I am trying to stay as independent as possible.

    Phew! If you made it this far, thank you. I only hope that it helps someone who needs it, whether you’re experiencing chronic pain yourself, or a loved one is. Now, if you’ll excuse me, I’m going to stretch and pray for a good night’s sleep afterwards.

Remembering the Father and Mother of the Independent Living Movement

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Judy Heumann and Ed Roberts are both recognised as prominent figures in the international Independent Living Movement. It is remarkable to think that two complete strangers from opposite ends of the United States would come together to spearhead what would evolve into an International Disability Rights Movement. This month, as we mark the anniversaries of their passings (Judy – 4 March 2022; Ed – 14 March 1995), I find myself reflecting on how the actions of these two individuals led to the formation of an army (in modern terms, a collective), that fought for equal rights for disabled people worldwide.

When I first started working with Offaly Centre for Independent Living in 2008, my first assignment was to research and understand the origins of the Independent Living Movement. I knew about Personal Assistance, but nothing about the existence of a civil rights movement for disabled people. I also knew about Rosa Parks’ refusal to give up her seat on the bus, but I’d never heard about the feisty New Yorker, Judy Heumann, who led a demonstration shutting down the streets of New York, before orchestrating what would become known as the “504 sit-in”. Nor had I heard of a young Californian called Ed Roberts who conquered his self-pity and established the first Center for Independent Living, after setting up an informal team of assistants that helped him live independently while he studied at the University of California in Berkeley.

Ed and Judy (I refer to them by their first names as I think of them as comrades or allies, not faraway idols) are often referred to as the Father and Mother of the Independent Living Movement. Both had polio, but Ed had acquired polio later in life, at the age of fourteen, and so he perceived himself differently to how Judy did – his journey to self – acceptance saw him transform from “helpless cripple” into a “star”, whereas Judy says in her autobiography, Being Heumann, that she always believed that she had a right to exist on an equal basis with others. Ed was also more significantly impaired than Judy, and one of the obstacles to his attending university was finding somewhere that could accommodate the 800lb lung he slept in at night. Ed was the first wheelchair user to attend the University of California and eventually, he was offered a wing of Cowell Hospital, the on-campus hospital, which he accepted with the caveat that he could treat it as a dorm, not a medical facility, with the same freedoms that non-disabled students enjoyed.

The establishment of the first Center for Independent Living in 1972, led by Ed and a group of disabled University of California students who dubbed themselves the Rolling Quads, marked the beginning of a battle for disabled people to have their civil rights recognised. By sharing their experiences and witnessing the nitty-gritty of each other’s lives, they formed a strong bond among themselves based on a mutual desire to enjoy a better quality of life, as equal citizens in America. Progress proved slow. In 1973, the Rehabilitation Act was passed, but Section 504 – which rendered it illegal for state-funded services to discriminate against persons on the basis of disability – was vetoed. Age-old excuses of cost of adaptations were trotted out as valid reasons to not sign the regulations, so passing the Act was merely paying lip service to equality for disabled people. 

By 1977, a frustrated Judy had had enough. In her eyes, and the eyes of her supporters and fellow activists, sitting around waiting for something drastic to happen was time wasted. Using her experience of successfully suing the State of New York for denying her a teaching licence as she was perceived to be a fire hazard, Judy and what was referred to at the time as an “army of the handicapped” gained access to and refused to leave the offices of Health, Welfare and Education in San Francisco. Judy was highly organised, and soon various committees had been established to organise food and bedding, as well as entertainment. Nonetheless, the physical impact of sleeping on mattresses on the floor was roughly felt by many protestors, many of whom developed bedsores. Despite this, it seemed that the protestors in San Francisco knew that there was too much at stake to back down.

In the later stages of the sit-in, Evan White, a news reporter, had amassed an impressive amount of footage of the protests. He described his jubilance at having the honour of sitting in during “meetings of strategy” with disabled protestors, as Judy led long meetings with fellow protestors every evening that often lasted into the wee morning hours. Everyone was given a say, and a job to do. By a stroke of luck, a nationwide television strike enabled Evan’s recorded reports to become front and centre of the country’s viewing schedule. This worried Califano more than the sit-ins themselves; it had the potential to damage his public image as a politician. On the twenty-fourth day of the sit-in, Section 504 was signed, a feat that was achieved by the will and determination of a strong collective of disabled people. (If you want to find out more about this sit-in, I recommend watching the award-winning Crip Camp on Netflix). 

Indeed, if we as activists can learn anything from Ed and Judy, it is that disabled people working together is the best way to attain our human rights. Having experienced discrimination and exclusion firsthand, we know best what we need. Although our lives are better than they were fifty years ago, we still battle to hold onto those hard-won rights that activists such as Ed and Judy, and here in Ireland, that Martin Naughton, Michael McCabe, Dermot Walsh, Ursula Hegarty and so many others fought for us to have. We must also come to accept that we work best as a collective. Nothing will change if we wallow in self-pity. Instead, we must use our experiences to make a better, more inclusive future for all of us. We owe it to Judy and Ed, and we owe it to ourselves, to never settle for a lesser life than the one we aspire to.

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.

Home

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Home!

On this sweltering hot Thursday afternoon, I am sitting in a first-floor apartment, overlooking the beautiful Lloyd town park below. This isn’t where I normally live; our house is undergoing some serious renovation work. Every night, I close my eyes and ask myself if I was actually mad to such extensive work to our charming little four bed which was, on the whole, perfectly fine, in the middle of a pandemic, no less (The answer is yes, by the way). Uprooting our child, surrendering our little baby (puppy) Troy into the hands of capable dog-sitters – God, I miss him so much! Was it worth it? I ask myself. Was it…necessary?

The answer to this is also yes. 

I’ve written before briefly about the deterioration of my physical impairment. Since then, I’ve been to physiotherapy a couple of times, and it’s really helped with the pain in my right knee. I’ve also been exercising a little more. I’ve even started eating more healthily, cutting down (though not out – let’s not lose the run of ourselves here!) on sugar and chocolate – which have been staples of my diet for as long as I can remember. (I was a picky child, and my mother reasoned that eating something was better than not eating at all). All of these changes have helped. I feel a bit better, slightly more energetic and, despite the chaos that’s unfolding in my world – not to mention the world in general – I feel more grounded and able to cope with the stress of it all. 

But here’s the upshot: no matter how healthy I eat, no matter how much physio I do, my wobbly body will always be unpredictable. Twenty years ago, I could have handled those concrete stairs in this apartment block more easily: okay, I might have still had to go up on my knees and down on my bum, but it certainly wasn’t the big palaver that I find it to be now. At the moment, I only leave the apartment when it is strictly necessary, or if I am going to be out for a couple of hours (though, admittedly, this is also COVID-related). Nothing is spontaneous at the moment; a simple trip to the shop is now a case of me psyching myself up to conquer my concrete nemesis yet again.

I shouldn’t moan, however. This is only temporary. Soon I shall be returning home – to my own home. A privilege that many people in this country – including many disabled people – can only dream of. When I was twenty-three, the recession of 2008 was still a year away, and I was living in a privately rented two-storey semi-d in Portlaoise. I was managing fine until one day, while carrying some laundry upstairs, I slipped and bounced down the stairs, landing awkwardly on the concrete below. As an expert in the art of falling, I had managed to preserve my head by tucking it into my chest as I landed. That was a wake-up call for me. I would not be able to adapt to my living arrangements indefinitely, not without making some serious changes.

It’s easy for me to understand why disabled people in their twenties, thirties and even beyond are still living in the family home. Firstly, accessibility is a major factor, not to mention a serious lack of rental properties at the moment. Then, if you are lucky enough to find somewhere semi-suitable, the cost of rent can reach over a thousand euro a month, and many landlords refuse to consider tenants on rent allowance or other benefits. Also, many landlords will not allow you to make necessary adaptations to their property, even simple ones such as installing grab rails in the shower. And sure, you can apply for a council house, but the process is a full-time job while you chase (often beg) your local councillors to advocate on your behalf. 

So what? I hear you ask. You may point out that there are many non-disabled people, particularly in the 20-40 age group bracket, in the same position. People with good jobs and incomes, who just can’t seem to get on the property ladder, or to find rental accommodation. 

For these younger disabled people, who still live at home but yearn to move out, there are even more complex issues coming down the line. Many disabled people are considered ineligible for Personal Assistance or Home Help services, either because they have a family member to care for them, or because said family member is claiming Carer’s Allowance for them. In some cases, family members find it difficult, for various reasons, to allow the disabled person to become independent. Often, not enough hours are offered to enable a disabled person to enjoy a decent quality of life, meaning that the person would not have adequate supports to live independently of their family (In 2017, a study revealed that almost half of disabled people who receive PA services are allocated the equivalent of forty-two minutes a day). Anecdotally, it is quite difficult for someone who is be considered “high dependency” to secure the level of assistance they need, especially at times that really suit them. Unless you have a telly in the bedroom, a good old-fashioned midnight Netflix binge is out of the question, and I have heard too many stories of people being put to bed at half eight at night.

The solution to enabling disabled people to live independently must be as multifaceted as the issue itself. Even if local councils provide more accessible housing, the only way disabled people are going to truly enjoy a rich and full life is if Ireland adopts a “rights-based” approach. This means having the opportunity to engage in meaningful and lucrative employment opportunities, for example – the pandemic has demonstrated that it’s possible for those employed in a wide variety of professions to work from home if necessary. It also means granting wider access to user-led services including Personal Assistance. This means having access to support how and whenever the disabled person chooses. However, until Personal Assistance is recognised as a right, true independent living remains a pipe dream.

As for me, I can’t wait to go back to my new, accessible home. I know that I am very lucky. But having a suitable roof over your head should not be a privilege. It must be recognised as a basic human right, for every one of us.

Power to change

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If you are reading this on 8 February 2020, it’s election day! Even though the general election in Ireland was only officially called about a month ago, it feels as though the pre-election propaganda has been going on for months and I’m sure, just like me, you are all tired of it, dear reader. (And speaking of being tired of people droning on, many thanks to those of you who read the throwback blogs I’ve been sharing on social media every day since this election was announced. You are truly my stars).

Admittedly, although there have been a few leaders’ and political debates on the telebox over the last few weeks, I haven’t actually sat through a whole debate. However, I have seen and heard small glimpses of them and it was like watching toddlers fighting over who drew that lovely picture. My own daughter will be eight on Sunday and I consider her too old for “he said, she said” sort of nonsense. Micheal Martin and Leo Varadkar have been particularly irritating. Neither of them have done the disability sector any favours over the years. The cutbacks began in Micheal’s time, and Leo has been the proud Leader of a party that once proposed the complete obliteration of the now precious Personal Assistant Service (which was proposed by James Reilly, then Minister for Health, in 2012).

People haven’t forgotten these things, it seems. Things in Ireland are on the cusp of change, with many once-sceptical people declaring their intention to vote for Sinn Féin. A decade of poverty, homelessness and unemployment have driven many people to the edge, with many of us still looking for signs of this economic upturn we’re supposedly in the midst of. I think it’s Orwellian of the government to assure us that things are improving when the cost of living is so high, when over ten thousand people (just three thousand people shy of the population of Tullamore, my home town) are homeless and those who emigrated during the lows of the recession saying that they couldn’t contemplate moving back in the near future to a country offering few prospects of career progression. As a struggling freelance writer, it’s easy for me to empathise with their point of view.

With the all-important vote here now, I’m still undecided who will be my number one. I know it’s so important to use my vote – not to would be a slap in the face to those brave and fearless suffragettes – but looking through history, I’m starting to wonder whether it’s really the way to make real change. Please don’t think that I’m trying to discourage people from using their vote – far from it! – but it was an Orwellian character, the everyman Winston in the dystopian novel 1984, who said –

“If there is hope, it lies in the proles.”

What I mean by this is that we need to be fearless and unflinching in our own convictions, and it is our responsibility to ensure that those who are elected into power follow the wishes of the people. That can only happen if we stand up and use our own voices with confidence and conviction. The people I admire in life are not politicians; they are ordinary people who were not afraid to make a stand. Rosa Parks, an ordinary woman, one day decided that she had had enough of being segregated because of the colour of her skin and initiated the Montgomery bus boycott in 1955. Subsequently, she became a symbol of resistance against racism in the USA, collaborating with Martin Luther King Jr in her pursuit of justice.

Seven years later, Ed Roberts, who had contracted polio as a teenager, fought to be accepted into the University of California, Berkeley. At interview stage, he was famously told “We’ve tried cripples before and it didn’t work.”  His subsequent acceptance into the University, along with some other severely impaired students, paved the way for future disabled students to gain entry. Roberts had a revolutionary idea that he was going to recruit and employ his own “attendant” as he wanted a life independent from his mother, Zona. He was going to “hire and fire” this attendant, and instruct them to carry out tasks as per his desires, not just based on what he was perceived to “need” by others. This left Zona free to pursue her own interests and subsequently Ed was not a burden on his mother. The establishment of the Center for Independent Living in 1972 heralded a monumental shift away from the misperception that disabled people could not make their own decisions or manage their own lives. Its establishment led to the philosophy of Independent Living spreading all over the world, even coming to Ireland.

The decision to bring independent living to Ireland did not come from government. No, it came directly from disabled activists themselves, including Martin Naughton, Michael McCabe and Donal Toolan. It was disabled people that took it upon themselves to revolutionise how services were being provided to disabled people at the time. This led to the founding of the first Irish Center for Independent Living in 1992. One of their first major projects, Operation Get Out, saw disabled people moving from unsuitable and outdated institutions into their own homes, where they could make both basic and life-changing decisions with the help of their Personal Assistants.

Over the years, disabled activists in Ireland have continued fighting and pushing for equality. Dermot Walsh is remembered for his work with Dublin Bus, and over the years, many disabled people have joined the campaign for accessible transport. In 2012, when the cutbacks to PA services were so cruelly threatened it was disabled people themselves, protesting for three days and nights outside the Dáil, who reversed that decision. Sadly, we have had no time to pat ourselves on the backs, because an activist’s work is never done. Many young disabled people remain trapped indefinitely in hospitals or unsuitable residential homes. According to research carried out by Independent Living Movement Ireland in 2017, 45% of those lucky 2,200 people in current receipt of PA services only have an average of forty-five minutes’ service a day, and people who have the highest personal care needs are being prioritised.

Can we really expect the government to bring about radical change? Or does the real answer lie closer to home? I have been reminded too often lately that life is short. How do we want to spend it? I understand that fighting and campaigning can be tiring, but believe me, complacency is a far more dangerous prospect.

I remember in 1997, when I was in sixth class in primary school, we had to write a composition about what we thought 2020 might look like. Some of it was bang-on, like having the ability to shop online and being able to pay for things by tapping your credit card. Of course, other suggestions were ludicrous, like having flying cars and being able to travel back and forth through time. But if you had told pre-pubescent me that in 2020, wheelchair users would still have to give notice to travel on public transport, that disabled people would still be trapped in unsuitable nursing homes and that we would not have access to the most basic services that enabled us to live independently, I don’t think I’d have believed it. Because it’s not only unbelievable – it’s scandalous.

The good news is that we can solve these things – us, the proles – by speaking out, saying no and rejecting the status quo.

Governments don’t always bring about the change we need. And they don’t want to reveal the dirty little secret: we, the ordinary people have that power. We’ve had that power all along, the freedom to use our own voices, to speak up on behalf of our peers, to say that the status quo just isn’t good enough any more.

Do you believe that one person can make a difference to the world?

And if so, why can’t that one person be you?

Disability Rights are Human Rights

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So, it’s happened, as many predicted it would – a general election has been called for the 8thFebruary, 2020. What an underhanded move, don’t you think? To call an election due to take place within three weeks? The short timeframe leaves us all scrambling to make our cases, to highlight pressing issues to election candidates in the hope that somehow, our electorates will improve our quality of life.

 

However, there is something that’s been bothering me, something that I need to clarify once and for all with you, dear reader. You may have noticed, that as a writer, I am in danger of pigeon-holing myself; after all, the name of this blog is “wobbly yummy mummy”. The keywords I use most, according to the word map located to the right of this blog are “disability”, “independent living” and “equality”. When I established this blog six years ago, I intended it to become a platform for a diverse range of subjects, not just disability activism. Yet, I don’t think of it as time wasted, nor do I worry whether it will impact on my future writing career. I’m proud of this blog, and what it represents. Above all, my writing serves as a reminder to all who read it that –

 

Disability Rights Are Human Rights

 

This reminder comes as the nation ramps up to challenge those who think they hold the solution to the many problems facing people in this country right now. Often, when organisations purporting to represent the needs of disabled people deliver their manifestoes to the vote-seeking candidates, they are told by the election hopefuls that they understand the importance of services for disabled people, that they want to protect those who are “vulnerable” within our society. That said, few candidates understand that it’s not our impairments that make us vulnerable, but rather the lack of access, services and respect that we as disabled people face on a daily basis.

The reality is that disabled people’s lives are affected in deeper ways by the government’s unwillingness to treat us as equals. It has been recently reported that Ireland is the worst country in Europe to have an impairment or disability, and this doesn’t surprise me in the slightest. One of the biggest challenges is that disabled people are still treated as “patients”, people who, in the words of prominent activist, the late Martin Naughton “are to be cared for rather than cared about.” We have to ask ourselves whether things can ever drastically improve for disabled people in Ireland as long as the HSE is the principal funder of disability services. Does this mean that disability will always be seen as a medical issue rather than a form of social oppression, like racism? Which, of course, is exactly what it is.

Progress

It would be amiss of me to imply that there have been no glimmers of hope in the last three years. On 7 March, 2018, Ireland finally ratified the United Nations Convention on the Rights of People with Disabilities. On November 19, 2019, a motion was brought to the Seanad by Donegal TD Thomas Pringle in collaboration with NUI Galway and Independent Living Movement Ireland (ILMI) to legislate for a Personal Assistant Service. This has been a monumental step not only towards securing a service for disabled people often described as “my arms and my legs” but bringing about a change in the overall narrative of disability. It was the first time in a long time that I observed the language that was used being focused on a rights-based approach rather than the usual “vulnerable” narrative. And although the safety of the future of personal assistant services is still not guaranteed, I feel optimistic about the future of disabled people right now.

But – and there’s always a but – we cannot and should not rely on elected representatives to speak on our behalf. Historically, disabled people have had to suffer the humiliation of not having their voices heard. This starts on a seemingly innocuous level, in our everyday lives, when our family members or personal assistants are spoken to instead of us being spoken to directly. This is referred to as the “does he take sugar” syndrome, and evolves into a warped reality where the views of disabled people are only taken seriously when they are endorsed by a “disability organisation”. I know that my little blog does not have the reach that I would like it to have, and while I would never claim to be the expert on disability issues, I know how exclusion, lack of access and discrimination, both direct and indirect, impacts on my everyday life.

My point is – we need to trust ourselves. We need to truly believe that we as disabled people, and we alone, know what’s best for us. If we don’t believe this – and it’s shocking how many disabled people doubt themselves because of internalised oppression – then the big decisions will be made for us. Where we live, who assists us, our dreams and the nitty-gritty of our own lives will never be in our hands.

So to reiterate: The issues facing the population as a whole also face disabled people.

 For example, disabled people are aversely affected by the housing crisis. Many adult disabled people, just like non-disabled people, are still stuck living at home with their parents. Others are living in hospitals or nursing homes for the elderly because there is no accessible housing available or because they don’t have access to Personal Assistant Services. There are no figures available to show how many of the 10,000 people who are currently homeless are disabled people, but logically people with a varied range of impairments would be logistically unable to access certain hostels and emergency accommodation.

The rising costs of living means that disabled people in Ireland (like many others) are forced to eat nutritionally deficient food such as breakfast cereal, pasta or packaged soup, because they must save money for heating and other bills, or because they lack the assistance needed to prepare a more substantial meal. And the free travel pass, which was intended to reduce isolation among disabled people from their communities, is useless when buses are inaccessible and both urban and rural train stations are unmanned.

Should I have the chance to meet any of the election hopefuls face-to-face, I shall be reminding them that disabled people are demanding their human rights, that the government urgently needs to invest in all of our lives, that we should have access to the same services and opportunities as the “non-disabled” population and, above all, that we have been very patient. We have watched the deterioration of vital services and yet the outcry has been barely audible. We have tolerated cutbacks, the denial of basic rights, the compartmentalisation of our needs into “special needs” for far too long.

We refuse to do it any longer.

We refuse to be spoken for any longer.

Henceforth, we will be collectively using our voices and demanding our human rights.

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

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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)

Budget 2020 (Poem)

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In case you are wondering what triggered this  poem, there was no further investment into Personal Assistant Services in Budget 2020.

You want us to  be silent –
To just sit here and nod
While you decide what’s best for us
and play at being God.
You ignore our pleas for equality,
For a chance to show our worth,
In fact, you’ve already decided
That we’re nothing more than dirt.
Oh, are these wild accusations?
We respectfully disagree
When all people can get married
while we still struggle to be free.
You treat us like mere children
Who need to be protected
And when we ask for our rights,
Our demands are all deflected.

See, there’s no money for the cripples
To live a decent life
Everyone is struggling
And experiencing strife.
Well, now  we’re calling bullshit
On your half-assed excuses
Because, with the right support,
Us cripples have our uses.
But we’re sick of being grateful
For things we do not want,
Of having to pander to your rules
When we really want to rant.
Our predecessors fought tooth and nail
for our freedom and independence,
and yet we’ve been reduced to the hell
of care plans and needs assessments.
We’re made to be accountable,
to justify our life choices –
the sound of rustling paperwork
drown out our screaming voices.

And now, I see young people
In homes before their time –
Some only in their twenties who
Haven’t even reached their prime.
I just thought I’d give them a mention
While you wait for your fat pension.

Why aren’t people more angry, you ask,
if these issues are so bad?
Could I possibly be exaggerating
Or am I simply going mad?
But I know you know the answer –
People are paralysed by fear
And you must know, deep, deep down
That they won’t say what you want to hear.
So you choose not to listen,
to deny us basic rights
knowing that we are getting tired
of all these uphill fights.

The soft approach isn’t working,
and while I hate to curse
Your fucking lack  of consideration
is making our lives worse.
You wouldn’t put up with this shit –
Why the hell should we?
The revolution is coming,
Even if it has to be started by me.

And so, I call on all my comrades
from all corners of this land
to say we deserve better
and finally take a stand.
Our lives really matter
and deserve proper investment.
We need our PA services
to make us independent.
Get rid of institutions and stop people
From being trapped in their homes.
Invest in our future
Or endure more of these angry poems.

(choice!
Oh choice!
What a luxury)

 

 

 

 

 

 

 

Adventures Down Under

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(I think this blog should sufficiently explain my absence over the last two months)

 

When I was sixteen and in Transition Year, our class acquired a new student. Her name was Melissah and she was Australian. As we got to know each other better, she told me more and more about Oz. My imagination went into overdrive as she spoke about diving in the Coral Reef and hanging out on the sunkissed beaches. It sounded like an extended episode of Home and Away and I knew that before I lay on my deathbed that I would have to see it for myself.

Melissah (‘Missy’) invited me and a few of the other girls I was friends with in school back to Australia with her, to partake in an exchange programme, but when I asked my parents, they looked at me as if I’d asked to remortgage the house. Possibly the same look I would give my own darling daughter if she randomly came home one day, at the age of sixteen, and said she was going to Australia for the summer with her pals. Sure, hun, whatever you think yourself! Get smashing that piggy-bank!

There would always be an excuse/reason for me not to go to Australia. First I had college, then I got a job straightaway with Offaly CIL, then I got married and had our beautiful daughter. I had become resigned to the idea that Australia would only ever be a pipe dream when on the 11 December 2018, as I was en route to a meeting in Carmichael House in Dublin, my husband rang to say that the flights had been booked for the second of July 2019 and to check my email to see if my Visa had come through. I don’t remember much about that meeting as I spent the entire two hours trying to be professional and not burst from uncontrollable excitement!

Having the trip of a lifetime to look forward to certainly helped me through what has been a hectic year so far. On top of trying to keep my writing going, I somehow completed the Certificate in Disability Studies in NUI Maynooth and gave two presentations about motherhood and disability in NUI Galway. I’m glad I was so busy this year because it meant that I felt like I earned the break. Before leaving, there was much deliberation over whether I should bring my electric wheelchair on the flight. To clarify for those who don’t know me as a person: my wheelchair is like a car to me because I cannot drive. It is a crucial piece of equipment in maximising my independence. Ultimately, however, we decided it was safer to leave it at home in one piece after reading several horror stories about mishandled electric wheelchairs in various airports.

Of course, a massive part of our decision to go over to Australia – and Perth specifically – was because my darling sister Alexandra has lived there for the last eight years. Alex moved to Oz two weeks after I discovered I was pregnant with Ali. When Alex heard we were coming, she was delighted and she generously offered for us to stay with her in her ‘little’ house for five weeks. This made the trip much more affordable for us and we got on without any major rows; at least we’re still speaking! I have to say she treated us really well – cooked us yummy dinners, drove us here, there and everywhere and brought Alison on days out when we were too wrecked to parent, or go anywhere. I am indebted to her and her partner Colm for these reasons alone.

The first thing I learned about Australia on our arrival on 4 July is that everything is so spread out. What I mean by that is that unless you are wealthy enough to live bang in the middle of Perth, you will need a car. Alex lives in Heathridge and while the nearest shop is five minutes’ drive away, it would probably take about forty-five minutes to walk. However, having seen the M50 of late, driving in Oz is relatively simple: people still drive on the left hand side and the roads are in excellent condition with few windy, unkempt roads. You can even cut across dual carriageways at designated points to turn around if necessary, or to cut to your destination.

Our first port of call was to the Joonalup shopping centre and the arcade, as we were unfit to do much else. On the Friday, we ventured into Perth to see Scitech, which was fully wheelchair accessible. It has interesting experiments and equipment and Ali loved it. After that, we went for an evening stroll in King’s Park, where we were overwhelmed by the magnificent view of Perth city touching the winter skyline. We saw the war memorial and picked up a nice parking fine for parking in an accessible parking space without a permit. Afterwards we applied for a wheelchair parking permit which was granted and issued within a few days. That wouldn’t happen in Ireland!

On the Saturday we went to Caversham Wildlife Park where we saw the kangaroos up close.  Their legs move as if operated by springs! We also saw koalas, parrots and llamas. There was a cowboy show and Alison and her new friend Charlie got to milk the cows. We got our photo taken with a wombat (who clearly hadn’t taken a shower in some time) and a koala. Those koalas have sharp claws, and are much heavier than they look! Still, it was an absolute honour to get so close to one.

The following day, we took it easy and watched the sunset on Burns’ Beach, a five minute drive from Alex’s house. The beach itself was spectacular and there was even a little playground for Ali and Charlie to play in. I noticed throughout our holiday that there was always a playground nearby, and not only were they clean and well-maintained, they tended to be physically challenging too: as well as the usual slides and swings, many of the parks we went to including in Mullaloo, Fremantle, Hillarys and especially the parks along Scarborough beach also had climbing walls, monkeybars and obstacle courses. Great for keeping the kids fit!

Our day out in Fremantle was extremely enjoyable. We went on a tour to Fremantle prison, which was open up until the 1980s. We saw where prisoners were hanged and as a disability activist I was pleased to hear that even wheelchair using offenders were accommodated in receiving this gruesome punishment! (Equality for all and all that). Afterwards Ali enjoyed her first taste of ice-skating in Fremantle’s ‘Winter Wonderland’. It took a few minutes but she eventually got the hang of it, with a little help from auntie Alex!

The highlight of the holiday was undoubtedly the road trip to Albany. Five hour drive down south through the bush, us three and Alex in the car. ‘Not much to see’ said Alex, and she was right: miles and miles of blackening trees, some of them with the bark burned off, and the occasional kangaroo corpse on the side of the road, which was devastating to see. Albany is a breathtaking place. After you see it, Bundoran and Kerry don’t seem to measure up! We stayed in a motel beside Middleton Beach, within walking distance of a beachside restaurant and another well-maintained playground. In the evenings we could have our dinner and chill out while we watched Alison play. The atmosphere was so relaxed out in comparison with Perth.

playground on middleton beach

Ali on Middleton Beach

From Albany we headed back north to Denmark, a quaint little town. We had booked a cabin to stay in called “The Green Leaves Cabin”. I won’t lie: when I heard cabin, I had visions of something akin to a treehouse: damp, airy and cold. From the outside, it seemed rather quaint but on the inside… I don’t think it’s an exaggeration to say that in many ways, it’s nicer than my own house. The living area was enormous, with a wood-burning stove and bookshelves stacked with contemporary books and board games. I cheated on the second night in Denmark by initiating a game of Scrabble and taking advantage by knowing where on the board to place my tiles to get the highest points (thank you, mum). There was also a plentiful DVD collection and the beds even had electric blankets! In the morning time, the birds congregated impatiently on the balcony, adamant that they wouldn’t leave until they were fed. The magpies were the most aggressive! The more we fed them, the more birds appeared. It was surreal. On the coffee table there was a little diary where people who had stayed there before wrote about their experiences. It seemed that everyone who had stayed there found it to be a truly magical place.

In Denmark, we did the Tree Top Walk in the Valley of the Giants. If you’re squeamish with heights, or walking on rickety steel bridges, then perhaps this is not for you as this attraction incorporates both. The Tree Top  Walk was wheelchair accessible, although I did find myself wondering how safe it would’ve been in my normal everyday Storm powerchair as opposed to the fold-up one I was using in Australia; the bridges buckled a little under the weight of my skimpy powerchair and the bridge itself was narrow – little wider than the wheelchair . As you walk up the bridge, you can see the magnificent trees below you. Some of them are enormous. One thing I noticed, as I observed in the John Forrest National Park, that in winter many trees lose their bark as well as their leaves. Some of the trees were also black, scorched from the hot sun during the previous summer.

me in valley of giants

Me in the Valley of Giants. Note how narrow the bridge is!

To complete our road trip, on the Friday night we stayed in Margaret River. The accommodation was not as nice as the Green Leaves (and after staying there, I don’t think that any accommodation will measure up ever again). It was a long three hour drive from Denmark, so to break up the journey we simply had to stop in to a cheese factory, a toffee factory, the Margaret River Chocolate Factory (imagine me a la Homer Simpson in The Land of Chocolate) and various little wineries (only samples, mind: Alex was driving. Takeaway was bought, however, in some places!). We didn’t get to explore much of the outdoors that evening as it was lashing rain but still it seemed a nice little place. The next morning we saw massive swells in the sea. Not exactly safe for surfing!

One thing I I had been looking forward to that ended up being a massive disappointment was the Bus Tour of Perth. It was ridiculously expensive for what it was ($150 or approximately €100 for three adults and two kids). When I looked at it online, I had visions of it being somewhat interactive like the Dublin City tours. I’ve never been on one but I’ve seen them whizzing past Trinity College, with an animated tour guide giving live commentary. On the Perth tour bus, however, the commentary is delivered via headphones, which makes for an interesting yet solitary experience. We sat on the top deck so that we could see everything but were absolutely freezing by the end of the two hour tour. For the last section of the tour, we sat downstairs. When I was sitting in my wheelchair in the designated space, I noticed that the slot for my headphones was located approximately fifty centimetres above my head – not accessible unless you’re Stretch Armstrong or you have somebody with you (perhaps disabled people in Australia don’t travel alone? I don’t know).

I can honestly say that I got to see everything I wanted to see, including the truly beautiful Rottnest Island. What was not so beautiful, alas, was the ferry ride on the way over and back. I felt truly pathetic, as the ride only lasted forty-five minutes each way, but I can now say that I know the real meaning of ‘choppy’. At one stage it felt like I was being thrashed around in an oversized washing machine. Blood-y hell. Reader, I am not ashamed to say that I puked, and dry-heaved, quite a lot in those forty-five minutes. You would need a stomach of steel not to feel a little unwell. It was worthwhile, thankfully. It is such a beautiful, laid-back place, dissimilar to any of the other places we visited. The main mode of transport is the humble bicycle and my heart swelled with pride watching little and big Ali cycle approximately fifteen kilometres together, side by side. On the island, I saw my first ever live quokka. They rambled all over the islands, waiting for you to take selfies with them.

alex and ali on rottnest

Two Alis on Rottnest Island

We packed so much into our five and a half weeks that even still, my body is still trying to regulate itself. From going to the ‘Gold Class’ cinema in Joonalup to bowling, we were rarely sitting around doing nothing. One evening we took a boat tour around the Perth basin and Ali even got to ‘drive’ the boat for a few minutes. Quad-biking across the sand dunes in Lancelin was a particularly exhilarating experience. It was tremendous fun. We were guided across the dunes by professional guides who led us down a couple of particularly steep slopes (the first one came rather by surprise and I’d say you could hear me screaming back here in Ireland!)  I wouldn’t say it’s a wheelchair accessible activity though, which is why I sat in the car while the others went sandboarding. It was definitely one of the highlights of the trip.

jay and me on quad in lancelin

Quadding at Lancelin Sand Dunes

Even as I write this, I still can’t believe that I’m home from the dream holiday that I’d been mentally planning for nearly twenty years. Although I missed home (specifically, the people at home) it was still hard to say goodbye to Alex and the country which will always have a piece my heart. Now, although I love the bright evenings here (it got dark at six in the evening in Oz as it was winter) I find myself missing the sound of busy crickets, the sweet smell of eucalyptus and the open highways (freeways? Not sure what the difference is?) If this is something that’s on your bucket list, do it. You know the way that sometimes reality doesn’t live up to your dreams? Yes? This isn’t like that at all. It truly was a once-in-a-lifetime experience that I will never forget.

Finally ( and I write this paragraph specifically for my wobbly tribe) what worried me most prior to the trip was how we’d manage in the airports, especially in Dubai where our stopover was only two-and-a-half hours. I chickened out of taking my own electric chair, so I was in a manual chair in the airport. The service we got when we landed in Dubai both times was excellent. Really top class. The staff were amazing, pleasant and brought us to our connecting flight promptly, even offering to stop in duty-free on the way. I was searched in security by a female guard in a little private booth. When we arrived back into Dublin after our trip, I was helped off the plane and brought into arrivals by a member of staff in an airport chair. It took forty minutes for my own wheelchair to come out on the oversized luggage belt (it came out upside down). This is why many of us are nervous of flying with our wheelchairs!)

And now, back to writing and to reality… and to continuing the job hunt….