A Future Within Us

I lay on the hard, unmade bed that I hadn’t really been able to sleep in the night before, and closed my eyes, trying to drown out the medley of Dublin city traffic below me: the deep hum of the Dublin buses, the screeching of random sirens, the faint echo of heavy footfall. Noises that were once so familiar to me ten years ago, as I lay on my overly-narrow single bed in Botany Bay in Trinity College. It should’ve felt like home, and yet, never have I felt so out of place.

I shouldn’t have been lying in bed at half three in the afternoon on such a momentous day as the 23rd September, 2017, a day that I worked so hard towards for the guts of a year. I had left my colleagues behind in the  Mansion House to celebrate the lives of those who had established the Independent Living Movement. An event that I had put everything I had into, turning down paying jobs and little tidbits of work during the summer in the process. I wanted to give all my energy to this event.

Two hours beforehand, I’d tackled one of the things on my bucket list: I performed a piece of drama that I’d co-written in front of two hundred people. As I climbed the stage, I thought I could feel a brick beneath my posterior, I was so nervous. I felt overwhelmed with emotion as I played ‘Rachel’ out on stage, a disabled mother struggling to escape the negative labels placed upon her by an indifferent society. The only way I can describe the experience is ’emotional nakedness’. The tears – and the anger – were evidently mine, not Rachel’s. I couldn’t have dreamed of the positive feedback, and yet afterwards, I wasn’t elated – I was physically sick.

Afterwards, I told myself that it was stress. I panicked because I was filled with fear that I’d pushed it a little too far this time, that once again I had seriously overestimated my physical stamina and taken on too much. But it wasn’t that at all. And it’s only this morning when I feel semi-normal again that I realise when I’ve felt that particular sensation before – the feeling of darkness, heaviness in the pit of my stomach – and it was when my mother died.

Or more specifically, the moment of realisation that she wouldn’t be around for me any more and, as a fully-fledged adult (I was twenty-five when she died) I would now have to shoulder a lot more responsibility for my own life.

It’s easier to be a sheep than a shepherd, easier to follow than to lead. Many of us have followed for years. When Martin Naughton died last year, it felt like the bedrock of the disability activism world was slowly starting to wear away. You could always count on the seven activists that ‘By Us With Us’ honoured on Saturday to lead the way. to spearhead the protests, the fight. Who can we look up to now?

And then it occurred to me that although an intimate knowledge of past successes in disability activism are crucial, we need to trust ourselves and have real belief in our own ability to pave the way to the future. By the way, this nugget of wisdom is coming from someone who has absolutely zero self-confidence and who is still learning to assert her right to use her own voice, the result of years of internalised oppression and being underestimated by those around her.

It’s taken me three days to recover from the emotional rollercoaster that was Saturday (even though I missed most of it) and to get my head around the fact that although the pressure is off in many ways, there is still lots of work waiting in the future. And we – not anyone else – will have to be the ones to put ourselves forward. One of the things that I did manage to gather on Saturday is that there is a general consensus that society is now going backwards, and that the ratification of the United Nations Convention on the Rights of People With Disabilities will not guarantee us our liberties.

That  will depend on us. On every single one of us.

Take Care of Yourself

It’s something that we all say to each other, almost like a cliché, at the end of phone calls or when bidding each other adieu when meeting face-to-face: ‘Take care of yourself’. We say it because we care about the other person, and yet we don’t always follow our own advice.

Correction: that should read, I don’t follow my own advice.

As long as I can remember, I’ve always been crap at looking after myself. And before you go off ringing social services, this never has impacted on my ability to look after my daughter; she’s never gone without. But somewhere along the way I seem to acquired the message that my needs aren’t as important as the needs of others. Perhaps it’s a result of internalised oppression (something I’ve been researching lately for the novel I’m writing), the result of growing up in a world where disability is some sort of ‘other’, a deviation from the norm.

Perhaps I need to re-evaluate what I can realistically achieve. I say that I’m writing a novel, but in truth, I don’t know if I’ll ever get it finished. A friend read what I’ve done so far and gave some great constructive feedback, but warned me what I already knew: that it may be difficult to publish and even more difficult to sell. I’m starting to wonder whether I should’ve stuck to short stories, started small. I’m trying to decide whether I’m in over my head. (He didn’t criticise the story though, which gives me hope).

This feeling of tiredness coincides with the fact that I’m waiting for four new (solid this time) tyres for my wheelchair, as one is quite badly flat. And to be honest, reader, I feel very hard done by this. I like being able to whizz around town from this shop to that, and still have the energy to write rubbish blogs and do other work, and being housebound does not become me. As I said in an earlier blog, the wheelchair has been an invaluable addition to my life. It offers me independence with my daughter and enables me to be both a mother and a writer.

I’m writing this  blog to inform my loyal followers that I probably won’t be around for a few weeks as I’m off, with the help of some great friends, to try and reactivate the entire Independent Living Movement (although if I get the wheelchair back, I’ll have energy to spare!) And to say thank you all for being so amazingly supportive of my ‘writing career’ and for your lovely comments.

That’s it for now. See you soon! Until then, take care of yourselves. I’m off to veg in front of the telly before another hectic week of trying to make a difference, however small, in the world.

 

Flying Low

Readers, this summer my husband, the little ‘in and I decided to ‘staycate’ in Ireland. We spent a lovely week in Galway and then the two of us went north for a wedding towards the end of July. It’s been a nice summer, but now my husband wants to go abroad later in the year. And while I’d love to, part of me couldn’t be bothered with the rigmarole. Believe it or not, it has nothing to do with flying with our  five year old daughter – she’s more sensible than the two of us combined – but rather the worry about bringing the wheelchair with us.

Don’t bring the wheelchair, we’ve been told before. Rent one instead. Well that’s all well and good, but the truth is I like my wheelchair. I’m used to it, I personally don’t think it’s overly bulky or heavy (125kg),and it means in the airport I can take my time, if I check in early. Admittedly, however, I’ve only brought it once, when we went to Salou in 2015.

This was with Ryanair.

I am not exaggerating when I say I rang their customer service a thousand times to give the specifications of the wheelchair – the weight, make, dimensions and the fact that it had a dry-cell battery. Oh, and the fact that the back folded down. And it was, after all the phone-calls and emails, a hassle-free experience.

I have an Invacare Kite. The same wheelchair as my friend Dani McGovern.

Dani was in my house last Wednesday. She’d called over with her husband John and son Logan and we chatted about how excited she was about little Logan’s first time on the plane (they were going to Birmingham for the weekend with her sister, her brother and their kids). They’d only been away as a couple in Lanzarote  a few months before so they had no reason to believe there’d be any issues this time either.

But when I read Dani’s sister Sharon’s Facebook status yesterday afternoon, I immediately felt sick. The story, which Dani shared with the Irish Independent today, was that there was no issue with Dani’s flight over to Manchester, but on the way home she was asked for the voltage of her battery which she was unsure of (Neither of us have been asked this before. You’re normally asked if it’s a dry or wet cell battery. Wet cell = no flysies. Ours is dry cell). She was given the option of flying without the wheelchair (Dani can’t walk, unless she’s harbouring a secret I don’t know about) or getting off the plane.

Can you imagine being told that your legs were going to be amputated or somehow decommissioned? I’m talking shite now, aren’t I? That’s how much sense flying without Dani’s wheelchair made. So really she had no option but to disembark the flight, leaving her husband and her young son (who, like any two year old, went beserk without his mammy in his eyeline) and wait for the next flight, an hour later, where by some miraculous intervention her chair suddenly wasn’t a ticking time bomb and she could fly! Makes sense, doesn’t it? (Just like my handwriting).

What wasn’t detailed in the article was that this isn’t the first time Dani’s been messed around when flying. We went to Mallorca in 2007, Dani, John Paul and I, and we’d brought Dani’s manual chair for me because taxis over there don’t take electric wheelchairs of the size Dani’s was at the time so we thought we’d have her small one for taxis (and for me if I got tired). Good thing too, because when we landed, the cabin crew arrived with the manual chair but there was no sign of the electric one! Panic is not the word, lads – it was like we’d lost a limb. Eventually it reappeared on the carousel – how it got there I haven’t a clue. In the meantime. our accessible taxi had threatened to leave without Dani, in a foreign country where we knew no-one.

Dani never went to the media about that, and she was within her right to. But if she had not gone this time around she would’ve inadvertently been saying that this treatment is ok, that it was somehow her fault. But it isn’t, and was not.

In short. Dani is more than ‘a girl in a wheelchair’. She’s a college graduate, a woman who’s been living independently since she was nineteen, a woman who’s worked hard to prove herself in every way, and in spite of some negative running commentary is a fantastic wife, loving mother, loyal friend and passionate advocate. She certainly didn’t deserve that treatment.

And in telling her story, she is reminding us that none of us do.

My Dystopian Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

I’m only human, after all…

TMI alert, people: I’m currently in the middle of my, shall we say, ’emotional’ time of the month. And as every woman out there knows, during this period (pun intended) we can become irrationally angry or overwhelmingly emotional for no apparent reason (but hey, isn’t that what chocolate is made for?) Anyway, there is a point to this, I promise. Stay with me.

My husband, my daughter and I were travelling in the car on Monday when ‘Human’ by Rag’n’Bone Man came on the radio. Of course, being an emotionally unstable female, I was instantly in floods of tears, much to the surprise of my husband who nearly crashed his car in shock.

‘What’s wrong with you?’ he blurted out, while I wiped my tears. I shook my head.

‘It’s crazy time again,’ I joked as I tried to compose myself. But there was more to it than that, and he knew it too. And I didn’t have the words to explain. I do now, though.

The energy of the song and the repetitive line ‘I’m only human after all’ brings to mind what’s been going on in the media over the last few months with the remains found in the septic tank at the Mother and Baby Home in Tuam. Like many of us I feel sick as I think about all those women, both young and old, who gave birth to their babies and never knew what became of them. It’s likely that some, if not most of these pregnancies were unplanned, and instead of being supported these women were disgraced, disowned by their families, and left in the hands of the nuns. You’ve read some of the stories, I’m sure. It’s truly harrowing stuff, and it’s been playing on my mind for the last two months.

How can we claim to be compassionate when we don’t even allow people to be human?

I live in a country where my rights as a person with a disability are not protected. This is because something called the United Nations Convention on the Rights of People with Disabilities (or the UNCRPD) hasn’t been ratified by the Irish government. In theory, this Convention guarantees that no person with a disability should be forced to live in an institutional setting against their will. It guarantees access to Personal Assistance as a right, not a privilege. Those who have ratified the Convention (and Ireland is the only EU country that hasn’t) are answerable to the UN if human rights are breached. With constant threats of cuts to PA hours and people with disabilities having to give twenty four hours to use public transport, Ireland would certainly have a lot to answer for.

What upsets me the most is when you have a disability, you’re not allowed to make mistakes. Everyone makes mistakes, takes wrong turns and yet, when you have a disability you’re either expected to be some kind of Superwoman, or an utter failure. If you make a mistake, well, obviously you’re not cut out for education or parenthood or whatever it was you were trying to do. People judge each other; I’m no different. But this pressure to live up to an arbitrary standard, set by people who may have no experience of disability, is overwhelming. As my loyal followers are aware by now, I came up against intense pressure to prove myself when I had my baby girl. And as you may be aware, I never sought help for my postnatal depression which lasted two and a half years because I was afraid that, combined with my disability, it would give the HSE the authority to take my daughter.

And my overwhelmed, hormonal, PMSing self thinks this is truly unfair. I feel frustrated and tired with it all, and I only wish there was more I could do to challenge this injustice, to stop history from repeating itself. Sometimes I wonder if life would be easier if I wasn’t so sensitive, so stubborn, if I just didn’t care. But the truth is, I do care. A lot. Too much.

But there isn’t much I can do at  eleven at night, and I’m pretty stuffed from that Easter Egg I’ve just polished off…

Hey, don’t judge me, I’m PMSing.

…and I’m only human, after all…

Cripping Up: Useful Exercise, or a load of Crap?

Earlier today my daughter, who is growing increasingly aware that her mummy is different to other mummies, asked me if I could walk properly when I was a little girl. ‘Nope,’ I told her, ‘My walking was pretty rubbish when I was a child too, but I didn’t need a wheelchair.’ She was silent for a second, then she said, a tint of sadness coming into her otherwise unblemished face:

‘Some of the girls in my class make fun of you. They say “ha ha, your mummy can’t walk properly.”‘ For a second, my heart stopped. This is the conversation I’d dreaded having with my daughter since the day she was born.

As nonchalantly as possible, I prodded. ‘And what did you say?’

Alison shrugged. ‘I said “don’t make fun of my mummy, it hurts her feelings” but they didn’t stop. I didn’t like it mummy. I would never do that to anyone.’ She was so absolute in her defence of my that it made me want to cry. ‘Mummy,’ she continued. ‘You know I don’t care if you can’t walk properly, or you’re in a wheelchair. I love you and you’re the best mummy.’ I sat, reeling. Where the hell had all this come out of, all of a sudden?

‘School,’ my friend said when I told her the story. ‘Kids learn all sorts from each other at school. They learn to see things differently, to question things, and most worryingly of all, they trust what each other says.’ This isn’t my first encounter with schoolkids of course; once upon a time, in the very same school in fact, I had the honour of dealing with this sort of thing first hand. And while some of the comments hurt (and they did, because I was an impressionable child, just as Ali is now), others were downright hilarious. One particular time I caused grievous injury to a classmate who was enjoying imitating my walking and consequently whacked herself off a door. ‘I never do that,‘ I laughed. And bingo, humour became my new method of self-defence. To be fair, it’s lasted pretty well.

But what has always interested me, even from my prepubescent years, is how people tend to be so fixated on my impairment and how they see it as problematic. ‘Do you ever wish you didn’t have Cerebral Palsy?’ is a question I’ve been asked more times than I’ve had hot dinners. My answer has always been the same, but it’s only in recent years that I understand why I’ve always said no. Cerebral Palsy, and any other disability for that matter, only becomes problematic when others are uncomfortable with it. Impairment and disability are different things. Impairment is a condition or diagnosis, and disability is the collective term for physical and attitudinal barriers facing people in society. I’ve lost you now, haven’t I? Allow me to explain.

My impairment wasn’t the reason why gaining entry to mainstream school was a battle, but the lack of supports available was.

My impairment didn’t stop me reaching third level education because I was enabled through Assistive Technology and Personal Assistance to do so. I used these as tools to unlock my potential.

I built a ramp on both sides of my home so  that I could consequently get a wheelchair to enable me to be independent and get out of the house. A lack of ramps would hamper my freedom, not my impairment.

My heart always sinks whenever I hear the words ‘disability awareness training’ because it often involves so-called ‘able-bodied’ people ‘cripping up’ to try and get a feel for what the world is like for a wheelchair user. With all due respect to those  of you who think this is a good idea, it’s not. Often, it involves able-bodied people using oversized or unsuitable wheelchairs and trying to navigate a physical environment. It’s an unrealistic portrayal because wheelchairs for full-time wheelchair users are designed for their specific needs. While doing something like this, you get a flavour of what it’s like to use a wheelchair to get around and the physical challenges involved. However, you cannot possibly be expected to know what it’s like to carry the burden of a history of hundreds of years of neglect, discrimination and degradation.

It creates awareness, as Kathryn Thomas did on The Late Late Show on Friday 7 April. Everyone knows her face. She was selected to create awareness of the barriers facing wheelchair users in Dublin. It got a great response from many people, saying that it was great to see this issue being highlighted at last. The reality is that people with disabilities have been saying these things for years. And yet, many wheelchair users, including Louise Bruton, who reviews access in Dublin for her blog, Legless in Dublin, was not asked to participate. She wrote an article for the Irish Times before the Late Late aired in which she said: ‘These pieces are a gimmick and if they help change the minds of a few people, then that is great, but they remove us from the discussion. By doing this, we are passing the baton and the opportunity to go deep into the experiences of a wheelchair user is missed.’

Blogger John Doyle was more direct in his criticism of this approach, saying in his blog: ‘Would your celebs paint themselves black and claim the understand racism? No they would not. Did John F Kennedy mimic being a different ethnicity to highlight racism? No he did not. He acted with legislation because he lived in a country that had one rule equality for one section and a rule of inequality for others’. We still haven’t ratified the United Nations Convention of Rights for People with Disabilities, which would mean so much more than a celebrity endorsement.

And why do we need celebrities to highlight the issues that we disabled  people have been discussing for years? The answer is simply we don’t – but for some reason our voices seem to only matter when they’re endorsed by politicians, celebrities and the likes. I wonder is this because people don’t want to know about the nitty-gritty of the discrimination disabled people face, or is it because they feel they can relate to an able-bodied person better? If that’s the case, will our voices, our own voices, ever be heard?

Because I don’t want my daughter answering questions about her ‘different’ mummy forever. I hope that one day she will be wise enough to say ‘You have a question about my mummy? You ask her yourself. I don’t speak on behalf of her, or anyone else.’

Wheel Independence

 

wheelchair.JPG

My poor, sad, neglected wheelchair (sad face)

 

 

I have really missed blogging here for the last two weeks (I’m back, yay), but to be honest, I just needed a break. I felt wiped, depleted and I know from hard  experience that when I feel like this it’s better to take a breather rather than having a meltdown and sobbing in my jammies at the side of the canal at 4.30am (ahem, apparently). I have been busy though with activism, and I got my submission in to Date With An Agent (I hope – I never enclosed an SAE to acknowledge my entry but I know my  future award winning novel will totally be selected), so that could account for why I’m that little bit more tired.

Or maybe it’s because for the last month and a half, I’ve been without my electric wheelchair, and the extra physical effort of walking everywhere is taking its toll. And thank God it is finally getting fixed tomorrow, because I am wiped.

My dear mother, who spent the first five years of my life doing physio with me every morning, was dead set against me using a wheelchair. We lived in a two-storey house when most of my disabled friends lived in bungalows. She wasn’t too keen on me having a wheelchair in college, although she understood the reasoning behind it. Growing up in a mainstream world led me to believe that one’s value was largely based on their physical ability to do things and to get around.

When I had Alison, my friend advised me that I wouldn’t want to miss out on doing things with my daughter, and so I got myself an electric wheelchair. Being ambulant I don’t think I’d have any chance getting one off the HSE. And for the first time since becoming a mother, I wasn’t housebound. I could take Alison for walks whenever I wanted, long walks and still have the energy to come home and do some housewifey things, and write my masterpiece. This is why the phrase ‘confined to a wheelchair’ annoys me so much. A wheelchair doesn’t confine, it liberates! Without it, I feel confined, trapped within the limitations of my body.

I firmly believe that when we are given access to tools like wheelchairs, technological aids and Personal Assistance, we are enabled to become the best us we can be. There is great strength in acknowledging that your physical impairments are not the problem, that society needs to address the needs of people with disabilities and be more inclusive. Above all, I believe that people with disabilities need to drive this change themselves.

It came to my attention over the weekend that student Kathleen McNamee, senior editor of the University Times, ‘cripped up’ or explored Trinity College campus in a wheelchair. What’s wrong with this, you might ask. Isn’t it great that people without impairments are trying to see the world through the eyes of a wheelchair user? Well firstly, Kathleen is not a wheelchair user; at the end of her article she wrote: ‘While I will be happy to hand my chair back tomorrow morning, I am also aware that not everyone is afforded this opportunity’. To me this implies that she sees the ‘problem’ as the wheelchair,  not the inaccessible environment. Also, why did she have to ‘crip up’? Why didn’t she look for the experiences of full-time wheelchair users who navigate the campus on a daily basis?

Secondly, I felt that the article was a little unfair on Trinity. When I carried out an access audit in 2004, we identified all of the problem areas and efforts have been made to fix things: the pathway through Front Square, there’s now a lift up to the Pav (the on-campus watering hole) and ramps to the buildings in Front Square. Things are far from perfect, but they’re improving.

Irish Rail, however, seems to be getting worse. A friend of mine told me recently that on principle she refuses to give any train station 24 hours’ notice of her intention to travel because she sees herself as equal. Today I had to travel by train (I had no wheelchair, just my rollator) and didn’t give notice, so I had no reason to be disgusted when assistance didn’t appear in Tullamore (even though I rang an hour beforehand), leaving me no choice but to fling my rollator and myself off the train. Had I been in my wheelchair I’d probably be writing this from Galway!

So to summarise, I’m looking forward to my wheelchair being repaired in the morning and to getting my independence and energy levels back. My normal life back. I know I should make more of an effort to get fit, and some might think I shouldn’t be so lazy. Feck that. My daughter needs a mummy who has the energy to do things and go places with her, and I need the energy to write, and that’s exactly what my wheelchair offers. It doesn’t matter how you get there, as long as you do!

Just Catching a Train (in 24 hours)

I’ve a meeting in Dublin on Wednesday. It’s straightforward  getting there: if you’re going the public transport route, you simply get a train to Dublin, then regardless of whether you come into Heuston or Connolly Station, you can catch the Red Luas to Smithfield and then it’s a ten minute walk. Easy peasy. Shouldn’t be complicated at all, right?

No, it shouldn’t. But this is Ireland, and we seem to have a tendency to make things more complicated than they need to be. And for people with mobility difficulties, public transport isn’t as convenient as it is for others.

I went down to Tullamore Train Station this morning (according to the Irish Rail website, passengers needing assistance are ‘advised’ to give twenty-four hours’ notice) to let them know that I intend to travel on the 09.29 from Tullamore to Heuston on Wednesday morning. I admit I did it as a bit of joke, to make a point. The guy who works there is lovely – I’ve nothing against him as a person – but he was reluctant to guarantee that I’d have assistance on Wednesday afternoon coming home. ‘If I’m here, I will definitely help you,’ was his response. If.

The assistance I, and many other wheelchair users need, is simply the provision of a portable ramp to enable me to disembark from the train safely. That’s all. In my case my chair is electric so there’s no manual pushing involved. But without the provision of a ramp, my independence is immediately compromised.

Okay, I admit that giving two days’ notice is a tad dramatic. But my attitude isn’t without basis. Just last month, a young  wheelchair user got stranded on Platform 2 of Tullamore Train station and had to wait 30 minutes before it was decided that the train should pull into platform 1. The lift was out of order, as is often the case in Tullamore.

I’ve been stranded on a train twice before in my wheelchair because there wasn’t assistance waiting for me at the train station (and I always give as much notice as possible – okay, not always twenty-four hour notice, but I do try). It’s very annoying having to get off at the wrong station and either get a train or a taxi back. It eats into our time and financial resources. Our time isn’t viewed to be as valuable as everyone else’s, I don’t think.

Impairment doesn’t create inequality, society does. Having to give twenty-four hours’ notice to use a train is discrimination and yet, in spite of the many complaints made in relation to accessibility to Irish Rail (according to thejournal.ie, there were 12 complaints about accessibility in 2014. This 12 merely represents complaints made, not necessarily the number of passengers who experienced problems with regards to access), things seem to be getting worse, not better, for disabled passengers.

I’m not alone in experiencing these problems. Last year a friend of mine and wheelchair user, Ann Marie Champ, was denied assistance in Newbridge train station and was forced to continue to Kildare. (Ann Marie works in Dublin and commutes every day). Once in Kildare she had to wait for a taxi to arrive from Portlaoise to bring her to Newbridge. An enraged Ann-Marie remarked, ‘I flew to Australia last year and had to get six flights and had no issues. It only took five minutes over the phone to organise. Yet, I can’t get 20 minutes up the road because of the refusal to lower a piece of aluminium.’

Louise Bruton, the founder of a blog/accessibilty guide called Legless in Dublin, also had trouble with Irish Rail last November when the assistance she had requested in Heuston Station didn’t arrive, leaving her stranded on the train for twenty minutes. ‘The train was stopped further down the tracks than normal and the lights were dimmed, so I was in a scene from a 1990s teen horror flick,’ she told the Irish Independent. “I stuck my head out the door… I shouted again and again and all I could hear in return was my echo. I pressed the train’s emergency button but nothing happened. And then I tweeted. My responses gave me the emergency number for Heuston and, thankfully, Heuston’s very apologetic station manager, Liam Donegan, answered my call and rescued me.’

Ann-Marie and Louise’s experiences show that there is no dignity in travelling when you have a disability in Ireland. And now it’s been proposed by a Cork TD that travel pass holders should pay a subsidy of €6 for travel! For disabled people at least, this is outrageous. Many of us don’t drive and are solely dependent on public transport to get around. And even if was decided that €6 was reasonable, this still wouldn’t mean that disabled passengers would be guaranteed worry-free, hassle-free journeys.

I’m afraid I don’t have definite answers to these ongoing issues. There’s no doubt, however, that these practices are discriminatory. People need to continue to be vocal about this issue, because for me, as a contributing citizen, this isn’t good enough.

In the meantime, fingers crossed that I get to and from my meeting in Dublin on Wednesday, without incident!

Round my Hometown

I was born and reared in the Midlands town of Tullamore for nineteen years.

Between the ages of nineteen and twenty-five, I decided to spread my wings and I moved to Dublin while studying in Trinity. I loved Dublin and living independently, and I think my favourite part was being able to get around so easily, whether it was in my electric wheelchair or using public transport (buses and Luases, I mean. The DART is notoriously dangerous and unreliable for people who use wheelchairs or have mobility difficulties). The Luas in particular became my lifeline when I was living out in Rathmines, and I used to use it coming into work in Trinity during the summer. When somewhere is easy to access and get around, it really adds to your quality of life. At one point, I was both working and studying. It was great.

Although I loved Dublin, I knew that I couldn’t afford to stay there after I graduated. So I moved to Mullingar, then Portlaoise before finally choosing to stay in Tullamore. It was great to be in a place that I felt I belonged in and that I thought I could get around easily and independently. And to be fair, I could – until I started using a wheelchair. Suddenly, certain areas of Tullamore didn’t seem so welcoming to me any more.

I’ve always believed that disability is defined by the obstacles that are created by society rather than one’s individual impairment, and I believe that reasonable accommodations such as ramps, clear signage, wide step-free doors and loud signals at pedestrian crossings can go a long way in ensuring our town is accessible to all who use it. In 2014, the Offaly Leader Forum (now the Laois/Offaly Leader Forum), which is a group of people with varied disabilities – physical and sensory – organised and conducted a full-scale accessibility review of Tullamore, the first of its kind in ten years. As people with disabilities, we were the experts in identifying barriers to access in town. The group took the undertaking seriously, taking photographs and compiling reports, and subsequently these reports were compiled into a hundred-and-one paged document, an impressive achievement by any standards. We then presented it to town councillors in Tullamore Town Library (which is accessible, according to our audit) and urged them to see Tullamore through our eyes.

Since making our presentation, the Laois/Offaly Leader Forum has established good working relationships with our town councillors, who we have met with several times to voice our concerns. Through doing this, we are now working together, and we have urged the council to consult us whenever they make changes in the town. And recently we discovered that our annoying persistence is starting to pay off.

Little changes and repairs are taking place all over town, but for me the most significant of these is  the ramps that have now been installed on the top of Main Street and at the Srah Roundabout. I live in Glendaniel, which is ten minutes’ walk from the Town Park, Lidl and Alison’s primary school, Scoil Mhuire, and the installation of these ramps means that I no longer have to proceed beside the footpath on the road onto traffic coming off the roundabout. It’s safer for me, my child and for the poor drivers who I’m sure don’t want to dent their cars on my wheelchair…! And the best part of the repairs is the knowledge that as a group, the Laois/Offaly Leader Forum, were taken seriously and listened to. But then again, we were dealing with people we knew for years, and people who have always supported the Laois/Offaly Leader Forum, for example Eddie Fitzpatrick and Declan Harvey (among many others, of course). Isn’t that the most important thing: being able to truly be an equal part of your community?

Now, more than ever, I’m looking forward to raising our child in a town that means so much to me. The town where I went to school, and developed a passion for writing. The town where I got my first summer job in the Tullamore Tribune, as well as my first ‘real job’ in the Offaly Centre for Independent Living Ltd. The town where my neighbour, who used to live eight doors down us, remains my best friend.

I have to admit, Tullamore always was a pretty great place to live, but with these little changes to our town, it can become a great place for everybody to live independently.

20 Experiences that you are likely to relate to if you have a disability in Ireland

Hi there. Yes, it’s yet another disability post. Sorry about that, but, y’know, after living with a disability since birth and working in the disability sector for ten years, you become accustomed to the challenges facing people with disabilities every day in their quest for equality, respect, or sometimes just to be left the f*** alone to live their lives. If you are a ‘normie’, that is a person ‘without disability’, you might be a bit offended, and for this I apologise; you can’t please everyone and all that.

Here we go:

1. You are going about your normal business in your local Tesco and are reaching for an item when a stranger who has been watching you for half an hour (following you around the shop actually) pops out of nowhere to grab said item, startling you and causing you to fall on the floor. You look like a tit because you’re a grown adult who is now lying on the floor. Now they are pulling you up by your arms which is a waste of time because  your feet are not ready and bam! down you go again. Why do they let you out on your own?

2. When people can’t understand you because of your speech impairment and they start talking slower to you: ‘I – can’t – understand – you’. Well, I can still understand you, you tool, it’s me who needs to speak slower. Incidentally, I’ve been reliably informed that if someone has a hearing impairment/is deaf/Deaf, speaking slower makes things worse as the person may rely on lip-reading. So there.

3. When you try to order a wheelchair accessible taxi (the phone numbers for these are known by a sacred few) and are told that the taxi doesn’t operate past 11.30pm (come on, even Cinderella got till midnight) or that you didn’t book it four months ago,so no dice Ha, thought you’d be spontaneous, didn’t you? You thought wrong.

4. Total strangers think it’s okay to come up and bless you. Sometimes they grab your wrist, holding back tears. ‘You should go to Lourdes’, they say. I’ve been offered money to go to Lourdes and be cured. Guess what, people? I’ve been to Lourdes, and I’m still disabled. I want my money back.

5. You decide to stop being a heathen and go to Mass. I recently went to a dinner held by a disability organisation and there was a lovely Mass beforehand. However, there is something slightly disconcerting about having a Gospel where Jesus healed all the lepers and cripples when 75% of your congregation use wheelchairs or walking aids. Not that I’m equating disability with leprosy, but still.

6. You are an individual! You are You! So why is it when you see a person with a disability on the street are you likely to think, ‘I wonder do I know them’, and if you don’t, ‘I wonder why I don’t know them’.

7.  You ring Eircom/the bank/AES/Electric Ireland in relation to your most recent bill and they have those stupid voice activated menus. And then, after being on hold for 45 minutes, they disconnect you because they can’t understand you.

8. On a related note, people hanging up on you because they think you’re drunk, which saps your self-esteem so much that all you can then think about is getting very drunk.

9. Eejits trying to push your electric chair because they’re too silly to simply say ‘excuse me’. Incidentally, there is a way to manually push electric wheelchairs which involves unlocking the mechanics underneath it, which is handy if it breaks down. However, I can easily move the chair myself if I want – it’s amazing! Also, I’m pretty sure that if I lifted somebody out of the way in a queue, I’d get punched in the face.

10. If you are foolish enough to get angry or annoyed at anyone in 7, 8 or 9 above, you earn the dreaded ‘angry crip’ badge. Nobody like the angry  crip, or to use the more alliterative term ‘crip with a chip’. You think the whole world is out to get you. It’s not, it’s all in your vivid imagination. Get a grip.

11. Because of the strong support network provided by IWA and CIL (thanks guys!), it’s common for people with disabilities to befriend one another through committees, social events, etc. Beware that if you decide to meet up with your mates outside these circles, and you all have disabilities, you are guaranteed to have at least one nosy Nelly come up to you and ask ‘are you all out for the evening? Isn’t it great to get out?’ Er, out from where? Do people still think that people with disabilities should be institutionalised? Scary thought.

12. If you go for a drink/coffee/meal with your husband/friend/Personal Assistant/Family member, they may well be asked what you want to order. This is called ‘does he take sugar’ syndrome (no, honestly). Basically it’s an assumption whereby  you as a person with a disability cannot make basic decisions for yourself because you are a complete tool. No point in asking you so. You may hope for the best.

13. A noun refers to a person, place or thing. Just to clarify: a wheelchair is not a buggy, wheelbarrow or chariot; a person who uses a wheelchair is a separate entity from the wheelchair (a liberation tool), a person who uses these aids does so to get around, not just to get a pass into using the accessible toilet.

14. Which brings me to this point: sticking a wheelchair symbol on a toilet cubicle door does not make it an accessible toilet. If you cannot get the door closed when you bring your wheelchair inside the cubicle, then the toilet is not accessible. I’m sure the world does not want to watch people with disabilities pee, but hey, if it does, who am I to judge?

15. If you’re a bit of a gambler, why not head off for the day on the train? Sure, don’t they even have accessible toilets now? (not bad toilets either). Don’t forget to remind the train station staff ten times to ring ahead to your selected destination so that they can have the ramp ready for you. But don’t be surprised if, when you arrive, there is no sodding ramp and the station weren’t informed you were coming. Sure it’s no big deal travelling to the next station, begging them to get the ramp and let you off, and travelling back. Sure what else would you be doing?

16. If you’re a real daredevil altogether, get the DART. My husband nearly had his arm amputated by the doors of the DART when they closed on his hand and  then the DART proceeded to take off. He was on the platform and he could feel himself being dragged alongside the train. It took six strong men to pry the door open and release his hand. The reason why my husband had his hand in the door in the first place is because my friend and I were waiting for the ramp which didn’t materialise. What did we do? See number 15 above.

17. If you have a disability, you have to be nice, polite and well-behaved all the time. Telling someone to mind their own business does not go down well. Don’t let them know that we are real people, sssh! Some people with disabilities, just like you normies, are generous, kind and friendly. But others are just downright assholes. And guess what? Just because you know one, doesn’t mean you know us all.
18. People think it’s okay to ask you about your sex life. This is just wrong on so many levels. Why do people want to know this information? I blame programmes like ‘Little People, Big World,’ a show where a family explores their everyday lives in the public domain. I don’t want to hear about your sex life, don’t ask me about mine!
19. Having children is a gift, and there is a mistaken assumption that our children will be burdened by us and will have to care for us because we have disabilities. This will never happen as long as  the government realises that parents can be empowered through the provision of services and equipment that put us in the driving seat. Simples!
20. Finally, having a disability is not the end of the world, but people tend to think that it is. They find it incredible that we can be devoid of resentment or anger at the world for the hand we’ve been dealt. I know I have days where I wish I had more energy and less pain, but I’m sure even normies have these days. So stand (or sit) proud and tall. You are brilliant. You are fantastic. You are the subject of much speculation and curiosity. Enjoy it. Jordan had to get her assets enlarged for that sort of attention.
And all you do is go about your everyday life!
Well done, you xxx