Monthly Archives: February 2017

Just Catching a Train (in 24 hours)

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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!

Throwback Thursday: The Others

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I’m going through a bit of a writer’s block situation at the moment, trying to work through the messy middle of my novel and fix it into something that ties in with the ending. My concentration’s letting me down though, so instead I thought I’d look up the animation my sister did for her final year project, nearly six years ago, The Others.

The message behind The Others is that it is society that disables us and moulds us into a state of dependency. The piece is voiced by my good self and Dani McGovern, a friend of mine who also has Cerebral Palsy. Note how the negative narrative of the piece disables the two women, and distorts the physical form.

This is the exact message I want to portray in my novel, if I can ever get it written!

Anyhoo, enjoy!

Credit for this piece belongs to Laura Maye.

#CripLivesMatter

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Over the last few years, there have been a number of bizarre occurrences in Ireland, a lot of which coincided with the recession of 2008. Suddenly, what was once one of the most prosperous countries in the world collapsed as housing prices plummeted, and unemployment and emigration soared. Headlines of doom and gloom swept the nation. And in the disability sector where I worked at the time, the most feared words were ‘cutbacks’.

The narrative at the time was that Ireland was on its knees, at the mercy of Europe. Everyone was expected to pay in some shape or form for ‘the good Celtic tiger days’ that the whole of Ireland enjoyed (read: the elite few). That period was almost identical to the dark world depicted in George Orwell’s 1984, where people believed everything that the media told them, where the written word controlled the psyche of a nation, keeping them in fear. None more so than people with disabilities.

It is estimated that disabled people in Ireland have lost 17% of total funding to vital services during recessionary times. The supplementary cost of medicines to medical card holders rose from fifty cent to two euro fifty overnight. The threat of cuts to Personal Assistant Services moulded us into a state of fear, undoing the good work of the activists who had fought tooth and nail almost instantly. It seems that the needs of disabled people are only important when there’s an overflow of money or a photo opportunity to be had by some politicians. (I hasten to add, not all politicians. Here in Tullamore our elected councillors are doing great work with us and bringing about real change).

Today, we live in a country where we don’t trust our elected leaders, where we have been screwed to the wall time and again. We look across the pond and condemn Trump’s behaviour, shocked when footage of him mocking a disabled reporter emerged during his election campaign. We despair at his behaviour and fear that he is creating irreparable divides between people.

But at least he’s open about his controversial policies. He’s not pretending to be a nice guy, conning people with his smarmy charm like Enda Kenny does. At a disability protest nearly a year and a half ago in September 2015, Enda went to ‘speak’ with the protestors and avail of some publicity. Offering Martin Naughton a cup of coffee when Martin was clearly unable to hold a cup independently was a clear illustration of how out of touch this government are with the realities of disability.

Having a disability these days is a little like  living in a dystopian novel. We live in a world where we are expected to conform to the ‘norm’. Our voices are either taken away from us, or distorted to make us seem either piteous or courageous. What we are fighting for are equal rights. At the moment we are not equal because we are different; we are the problem. However, the United Nations Convention of the Rights of People with Disabilities(the UNCRPD) recognises that our society has a duty to enable us to make a real contribution as equal citizens. Unfortunately, Ireland has not yet ratified this, even as a tokenistic gesture, and the uproar about this is real, but somewhat sporadic.

That’s why when I read this blog about the Women’s Rights Marches and the support it had from so many people that it saddens me that disabled people in Ireland have yet to do the same. Don’t get me wrong – there are so many activists out there who are genuinely trying to change things – but it seems to me that we are all a little fragmented right now. Part of this may be due to the fact that we face our own challenges every day, and sometimes these seem so insurmountable that we forget that others face the same challenges.

Only we have the power to change this depressing narrative. I’m sick of talking about it, and sick of living it.

Our lives matter. We matter. Achieving true equality in Ireland matters. As I wrote in an earlier blog, we have marriage equality, so equality for those with disabilities should follow.

And the time is now. No more excuses.

We matter, and deserve to have our voices heard.

Be my Valentine …

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Love it Karen – direct and from the heart x

Beating Myself Into a Dress

valentine-post-it A Valentine’s love post-it from about six years ago my husband left for me on the inside of a press so I’d see it when I opened the cupboard to make my breakfast. It’s still there!

I think I write a variation of this post every year on here, or if not here on my Facebook page, so you’re probably all sick of me waffling on, but hey, tradition is tradition so here it is.

I like Valentine’s Day.

It seems it’s a bit of a novelty these days to admit that you like Valentine’s Day, that you get some pleasure out of the day. In every newspaper and blog, in online forums and in real life people poo poo Valentine’s Day, giving out about commercialism and overpriced tat and forced love.

And you  know, I get it. I do. Because in a way they’re right. Nobody needs a six-foot…

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Memories on a Birthday

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Alison’s first birthday. Not pictured: me blubbering like a baby

 

At 11.52am on Thursday 9 February 2017, Alison will be five years old. I can’t believe that my not-so-little girl will be five today. I also cannot believe that I, a total dummy when it comes to kids, have been a mummy for the last five years.

Every year since Alison’s first birthday, I’ve always used the ninth of February to look at the year gone by, to marvel at how Ali has grown and what she’s learned. This year has been a particularly busy year in Ali’s life. She started primary school in September and is currently excelling in Irish and reading. In the evening she sits down the minute she comes home from school, anxious to get her homework done. She then spends the rest of the evening churning out some ever-impressive artwork at her desk, each picture better than the last. It makes me so proud to be her mummy.

In truth, it’s only really in the last two years that I’ve started to believe that I deserve to be her mummy.

When the words ‘disability’ and ‘care’ are thrown into a sentence together, it’s often wrongly assumed that the disabled person is the one being cared for. If you google ‘disabled parenting’ there is very little support or advice out there for disabled parents. On top of that, there is a narrative that disabled parents are inadequate, that their children are more susceptible to abuse and neglect, and that they cannot be trusted to make sensible decisions regarding their children’s welfare. Just this week I had a lady write on my Facebook page that she had no idea that people as disabled as I am were capable of raising children and admired my bravery in sharing my story. (She had seen the documentary I did a few years ago, Somebody to Love). Undoubtedly she meant well but it was a stark reminder of how hard our family has had to work to be accepted as part of the fabric of our community.

I find Alison’s birthday hard for many reasons. Firstly, because the sense of gratitude I feel is overwhelming: there are so many women out there who would love children and yet I, the absolute baby dummy, was blessed with the most beautiful daughter. Secondly, because I don’t really want her to get any older and lose all the wonderful innocence she has now. But mostly because it’s been such a struggle to achieve the relative normality that we enjoy now. And thankfully, she has no comprehension of how this family has struggled.

Every year, I’ve always cried as Alison blows out her birthday candles. This is because at Alison’s first birthday party, she grabbed the flame with her little hand, only crying for a split second with pain. She had faced danger, and overcome it. I had faced doubts and ongoing criticism for the first year of Alison’s life from so-called ‘professionals’, and I was not brave enough to challenge them. Instead, I stayed quiet, pandering to whatever I was told in the belief that if I didn’t, my child would be taken from me. I believed I was useless. I believed that I was a danger to my own child. I believed I was not the mother she deserved.

 

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Alison with her daddy on her third birthday blowing out her candles. Not pictured: me blubbering like a baby.

 

But in spite of myself, the years have flown by and I have managed to get her to five reasonably happy and healthy. I’ve managed to gain credibility as a semi-respectable parent in my hometown and in Alison’s school. And Alison is so intelligent, witty, kind and beautiful that I feel honoured to be her parent. She makes both JP and I proud every day, and for the most part we don’t take for granted the richness she’s brought to our lives. Our world revolves around her, as it should. We just love her so much.

 

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Alison on her fourth birthday – you all right in the corner there mummy?! So embarrassing….

 

I’ve no doubt that Alison will have a lovely birthday, and all that I can hope is that the emotional scars continue to fade. But please don’t judge me if you see me sniffling over her birthday cake again. This girl is the centre of our world, and by God, we’ve fought so hard to keep our little family together. And, without doubt, it’s been a struggle, but so worth it.

Musical Inspiration

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I hate days like yesterday when, no matter what you do, you just don’t feel like writing. Even the thought of reading over stuff you’ve already written feels  exhausting. On days like these, I find that putting in my earphones and listening to some music always helps to get the juices flowing. It’s time-efficient; you can listen while doing the cleaning, and I spend the time daydreaming  about what my characters are going to do next.

Here are five of the songs that motivate me to do some writing:

  1. Pompeii – Bastille:

This is a song that my sister Alex introduced me to back in 2013, and it really struck a chord with me. At first it was painful to listen to because I associated it with her (she’s living in Australia and I miss her every day), but when I listened to the lyrics I realised that this song aptly encapsulates the message of my ‘novel’ – the notion of a society that is reluctant to change: (‘If you close your eyes, does it almost feel like nothing changed at all?’) Every time I hear it, I think of the Independent Living Movement and how it sometimes feels that we are getting no closer to achieving equality for disabled people.

   2. Talking ’bout a Revolution – Tracy Chapman:

Thanks to my friend Orla, I’m still a shameless Tracy fan. Almost thirty years later, ‘Talking ’bout a Revolution’ is still as relevant as it ever was. Our government continues to create social divide and while we are all furious, we can’t seem to change anything; revolution in Ireland sounds ‘like a whisper’. My love affair with Tracy Chapman started shortly before I read To Kill a Mockingbird. and for me this song – and indeed all of her music – demonstrates the importance of denouncing discrimination. All of her music is slightly uncomfortable, and again reflective of a society that is slow to change.

3. Dear Mr President – Pink:

This song is so different from Pink’s usual ‘in your face’ style, which makes it even more poignant. Although the song is addressed to former President George Bush, it could also be directed at Donald Trump or even Enda Kenny (‘How do you feel when you see the homeless on the streets? … How do you sleep while the rest of us cry?’) The line ‘how do you dream when a mother has no chance to say goodbye?’ hits me every time as I think of all the women across Ireland who were forcibly separated from their babies over the last century (including the protagonist of my novel and her mother). A history that, in Ireland, we are still too embarrassed to talk about.

 

4. Just a Girl – No Doubt:

The tone of this song is slightly more upbeat – and more angry. It’s the ultimate feminist song, a call for women to be treated equally. It’s sarcastic from start to finish (‘don’t you think I know exactly where I stand?’ ‘I’m just a girl, guess I’m some kind of freak.’) It’s a song about being tired of being defined and controlled within a patriarchal society. And I can relate to how annoying this is (‘Oh I’ve had it up to here’).

 

5. Turning Tables – Adele:

This is an important song to me because the music and lyrics capture the relationship between Rachel (the protagonist of my story) and Sister Anthony (the antagonist). Anthony is Rachel’s carer but she abuses her power, and her words and actions mould Rachel into a person who believes she is worthless. As Rachel moves away from residential care, Anthony’s words continue to haunt her (‘under haunted skies I see you, and where love is lost your ghost is found’). Rachel needs to forgive Anthony her mistakes in order to move forward, but has built an emotional wall (‘I won’t let you close enough to hurt me’).

 

Admittedly, these aren’t the cheeriest of songs, but they really help to get the creative juices flowing. Don’t worry, I’ll use headphones, I promise.

 

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