Monthly Archives: March 2015

Writing is torture. Where am I going wrong?

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Six months ago, I had a sudden epiphany. I’m a PRO for a disability organisation, and I used to really enjoy writing. I wrote a play when I was sixteen, and studied English for four years in Trinity College. I think the notion to write more was inspired by the fact that two (awesome) people I went to college with, Louise O’Neill and Ken Mooney (check out their work, it’s fab) have both had their books published in the last two years. Feeling more than a pang of envy, I decide to knuckle down and take writing seriously. I have an English Degree, how hard can it be, right? And yet, every night, I sit at my laptop and somehow no work gets done.

I’ve decided I’m sick of this cycle of unproductivity and that it’s time to pin down where I’m going wrong, in the hope of having some miraculous breakthrough and becoming the best writer in the world. Let’s study my writing routine.

9.45pm: Little one’s in bed. Time to knuckle down and maybe finish the journalism assignment I started three months ago.

9.55pm: There’s some really good stuff on thejournal.ie. ‘Five ways to tell if you are truly Irish’ and ’20 expressions only  the Irish know about’ is riveting reading. I’m sure it will come in handy for my upcoming article/blog about International Women’s Day, which took place a week ago.

10.10pm: Okay, stop messing around now. Close off Internet Explorer  and open Microsoft Word. I write/freewrite for about ten minutes every night, to get the proverbial juices flowing. I look at what I wrote the night before and think, God, was I drunk or something? Type more random shit in the hope that the good stuff is yet to come.

10.35pm: The Eastenders theme tune thuds behind the closed kitchen door. Feeling smug because I don’t watch it any more. I just annoy my husband afterwards by asking a million questions about it before bedtime. I know, deep down, he doesn’t mind (much)

10.45pm: Do we have any chocolate? It might give me the energy to concentrate.

10.50pm: I have eaten too much chocolate. Think a toilet break may be in order. That way I can wash my face and regroup.

11.00pm: I seriously need to lie down, but I can’t. I will persevere, even if it kills me. I shall not be defeated. People with disabilities do ‘triumph over adversty’ best, right?

11.10pm: Look over the ramble I did an hour ago, in the hope that I can pull something out of it. Yes, there might be, if my audience skim-read, or are incredibly interested in my to-do list for the week.

11.20pm: Yay! I am actually doing my assignment now! I am in the zone, I am truly a genius. I am finally waking up. I will persevere until this assignment is done. I pulled all nighters in college and I’m still here. Sure I had a baby three years ago and was able to push through sleep deprivation and night feeds. And all I have to do is either finish my assignment, or write a blog: something, anything. It should be easy in comparison to what I’ve had to achieve in the past. (I take a moment to admire the many times I’ve triumphed over adversity. Gosh, I’m just great)

11.35pm: Is the dryer finished now? *checks* No. It’s okay though, it gives more time to do some work and finish things off. Time really is a gift, hidden in the least obvious of packages.

12.00am: Are the clothes dry now? *checks again*. Yup! Thank God. I am bloody exhausted. I can’t feel my arms, but that’s okay. I’m just shattered from all the great work I’ve been doing for the last two and a half hours. I’m pretty great, when I think about it. I wonder would they cast a genuine person with a disability in the cinematic depiction of my life story. If not, I think Cate Blanchett might be an adequate substitute. (ahem, I haven’t given this any thought, honest). Oh well, time for sleep. Ahhhh.

1.30am: *wakes in a sweaty panic* Aggghhh! My assignment is still overdue! I haven’t written anything at all! What was I doing for two and a half hours?!

JP: (beside me when I wake with a start and probably kick him): You okay? What’s wrong?

Me: (deciding my husband deals with enough crazy from me without adding to it) Er,  spasm…

So, people, this is my writing routine. Where am I going wrong? Answers on a postcard please.

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When no words are coming, what do you do? Write a poem about it!

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No. Words. Are. Coming. Lately.

As I sit at my laptop, waiting for the words to come,

Thoughts crash together in my brain, becoming mangled and broken;

I try to stay calm and serene, but the right words elude me,

I feel they are watching me from a comfortable distance

Laughing and mocking me. I feel the frustration rising within.

It burns my soul and crushes my being. The words must come,

Without them I am nothing. I can say nothing, I can’t be defined

And if this is the case, can I really exist? So I persevere

Writing bullshit and nonsense and shaking my head,

This is not good enough. Who will this offend? Who can I impress?

Writing is not a choice, it’s a terrible infliction

That follows the victim forever, strangles them, drags them down.

And yet I can’t fight the urge to keep trying

To create something special, something small, in a world

Where the search for perfection threatens to destroy our humanity.

I take a deep breath and say,

I am not perfect; I am shattered and broken,

But I will continue to try, to search for the unattainable,

Because the search for the right words is as important as the finding,

And when they are found, there will be nothing more to say.

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

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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