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The Crumbs from the Table

Hey guys, guess what today’s ranty blog is going to be about? *fanfare* You’ve guessed it – the farce otherwise known as Budget 2018, which was released earlier today (10 October). Though you know what, I’m not actually surprised at how little it helps ‘our people’ (aka us crip-folk) and you know why?

Because the UNCRPD (United Nations Convention on the Rights of People With Disabilities) hasn’t been ratified yet! What’s that got to do with the price of eggs, you may well ask (or not, maybe you don’t give a shite). Well, I’ll tell you, shall I? As long as the Convention remains unratified, disabled people are at the very least being denied the rhetoric to challenge the discrimination and sometimes the cruel and inhumane torture doled out to them on a daily basis!

Our government continually makes excuses for the delay in the ratification of this UN Convention, allowing them to blatantly disregard the human rights violations that are occurring in the meantime. For example, Article 19 of the UNCRPD states:

 States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

If the Convention was ratified, then the government would have to justify why there are currently over one thousand young people with disabilities and an estimated three thousand disabled people in total inappropriately placed in nursing homes. It would have to explain why funding for Personal Assistance is allocated to the HSE who in recent years, owing to financial constraints, have been awarding the service on the basis of absolute need – in their eyes, accessing work/college, personal care and physio. Gone are the days where a person with a disability could be trusted to be accountable for their own decisions. Instead, a lack of funding has resulted in service users (‘Leaders’) having to justify and account for every minute of their P.A. service. Personal Care trumps all. As long as we’re up and dressed, it doesn’t seem to matter whether or not we can actually go anywhere! This is how people become institutionalised in their own homes, a common problem that is rarely discussed.

There has been no additional funding in this area since 2008, but there has been increased demand for services. As a result, many people are on waiting lists for P.A. hours, some of whom are stuck in hospitals and nursing homes in the meantime. Some of these people are well able to contribute to society, so why aren’t we letting them?

Under Article 15, which states ‘Freedom from torture or cruel, inhuman or degrading treatment or punishment’, Ireland has a lot to answer for. We’d all be naïve if we thought that Aras Attracta was the only serious incidence of cruelty toward disabled people in congregated settings. HIQA, though useful, is very clinical in its approach and the danger is that it may be merely ‘a tick-box exercise’ which doesn’t actually measure the happiness of residents. I have yet to see a HIQA report that recommends that some residents (or most, but not all – I appreciate that) would greater benefit from being accommodated to live in the wider community with support.

If HIQA decide in the future to regulate community services, then they must do so with Independent Living and its components of independence, empowerment, choice, options and rights as the core of their policies. Our government needs to realise that the ratification of the UNCRPD (whatever this entails) must shift the disability narrative from one of charity to  one of empowerment. We don’t want to have to be grateful for government handouts, but we are never going to be able to contribute to society in a meaningful way unless we’re enabled to do so. And this must happen through investments in the services we choose.

We want rights, not charity.

We want all the cuts made to disability services reversed, as well as additional investments. Because after today’s budget, people with disabilities are no better off than they were ten  years ago.

I’m sorry, but the crumbs from the table just aren’t good enough anymore.

 

 

 

Happy World CP Day!!

*Some websites are telling me this is the 5th October every year, others are saying 6th. I will be observing it on both days by eating copious amounts of chocolate*

Hey everyone, happy World Cerebral Palsy Day!

I wasn’t going to bother writing a blog in honour of this special day because I don’t want to get too repetitive (okay I know that ship has sailed but I did write a blog on it last year), but when I read last year’s (god-awful) blog entry I realised that I’d written it on the assumption that all of you actually knew what Cerebral Palsy was. For those of you who don’t know me, Cerebral Palsy is what puts the ‘wobbly’ into wobbly-yummy-mummy. There’s a wealth of information about the disability around the interweb, but why would you bother with that when I, an actual person with CP (and therefore an expert) can teach you everything you need to know?

So…

  • Cerebral (brain) Palsy (paralysis) is caused by a lack of oxygen or a head trauma either shortly before, during or shortly after birth. Which is a bit of a pain when you think about it, because your brain controls everything your body does. So, for example, when your non-CP brain says ‘Pick up that cup,’ your hand grabs the handle and voila. Whereas a CPer could do anything from grabbing the cup to going into spasm and hurling it across the table. It’s this unpredictability that makes life that little bit more interesting.
  • It’s estimated that people with Cerebral Palsy use at least twice the amount of energy ‘normies’ use basic things (the perfect excuse, in my opinion, to laze around with chocolate in the evenings). As I’m typing this right now, my involuntary movements are in overdrive: my head is bobbing, my legs are moving – neither body part are needed for the act of typing.
  • Also, every person with CP uses their body in different ways. Unfortunately this can accelerate wear and tear, but there’s sweet FA we can do about it. For example, I’m unsteady on my feet but I find that if I do things on my knees I can do a better job at things like hoovering and folding laundry. I often get swollen knees, something I never got in my teens (I also did my homework at my bed, on my knees). I also fall a lot on my knees. My poor auld knees. I also know people who type with their tongues, elbows and feet a la Christy Brown. We are resourceful folk.
  • Cerebral Palsy is characterised by the presence of many things, including unsteady gait, speech impairment, involuntary movements, poor coordination and so on. But in my experience, it doesn’t affect any two people in the exact same way. I’ve yet to meet a fellow CPer whose impairment is an exact mirror image of mine. A few people may have moderate to severe intellectual impairments, but this is not always the case. A speech impairment is not an indicator of poor intelligence.
  • One thing that I’ve learned about CP that you won’t find on Wikipedia is that some of us (as in myself and at least five other CPers I know) are prone to bouts of uncontrollable giggling. Which on the whole is hilarious but also completely involuntary. If I had been any other student in my sixth year English class I would’ve been suspended for my ‘disruptive’ behaviour in class. My CP friend had similar experiences in college where her giggling disrupted whole lectures and frequently set off waves of giggling in lectures.
  • The following point is not only related to people with Cerebral Palsy but to all people with disabilities: cinematic depictions of people with CP should be portrayed by disabled actors and not Hollywood names ‘cripping up’ for roles. I mean, would you find it acceptable for somebody to paint themselves a lovely brown colour for a role? No, you’d call it racist, and rightly so! I bring up this point after meeting an actor with CP a couple of weeks ago who, for obvious reasons, only gets called to fill the roles of disabled characters. It seems that ‘cripping up’ for roles has now become normalised (look at Me Before You: a disabled character has the lead role, but is played by a non-disabled actor.) It’s not as if there’s a plethora of work out there for disabled actors, so let us represent ‘our people’ when we can!
  • Finally, people with CP are just that – people. Some are nice, some are assholes. Most importantly, we are definitely not inspirational purely in the act of having CP. In fact, comedienne and writer Francesca Martinez (who, if you look her up on YouTube, will tell you even more interesting gaffes about having CP) renounces the label of ‘inspirational’ by saying she spends eleven hours a day in bed (lucky sod). We are not all the same, and don’t they say that variety is the spice of life?!

Phew, that’s a reasonably long blog. I’m exhausted from my involuntary workout. Off to eat chocolate. For energy purposes, of course.

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.

Legacies

Today, as my husband slinked into the sitting room to eat his dinner in peace, something unusual happened. Within thirty seconds he’d come back out into the kitchen and said in a casual tone certainly unfitting to the matter at hand, ‘There’s a bird flying around the sitting room.’

I closed my eyes as I imagined our black leather couch now covered in those trademark yellow and white stains. ‘You’re not bloody serious?’

‘Afraid so. We shouldn’t have left the front door open.’

Now, if you asked me if I was afraid of birds, I’d normally say no. But you’d need to contextualise. For example, I have no problem watching autumn migrations or gatherings of birds in the garden. Hell, because my daughter is a nature fanatic, I often have to follow them around the park, driving my wheelchair as slowly as possible so that it doesn’t ‘click’ and frighten them away. But the thought of one trapped in our sitting room, flying frantically, trying to escape, filled me with trepidation.

Walking softly towards the sitting room I peered in to see a little robin, with a fiercely red breast, casually exploring our sitting room. My husband and I looked at each other and smiled slightly, and I recognised something in him I wasn’t expecting, a softness. Normally, we would both be sort of like get that bird out of our sitting room before he shites everywhere, but this was different.  It felt like a presence, like an unexpected but welcome visitor. One of our mothers, perhaps, or Maisie, my mum’s friend who, before she closed her eyes for the last time just two months ago, gave me a green card with a little redbreast robin on it. The card simply read Thinking of You.

‘We have to guide him out, before he has a heart attack,’ my husband finally conceded, before gently herding him towards the front door and closing it.

For the superstitious among you, I’m sure you know that a robin is meant to represent a loved one since passed, and its presence symbolises that he/she is thinking of you, that he or she is near. For me, however, robins represent childhood innocence, dependability. Growing up, we had a conservatory at home and one morning, a little robin hopped in through the open doors while we all watched silently. He explored a little, he sang and he left. Soon, that same robin (or so we liked to think at least) came back every morning, let himself into the conservatory and made himself at home. It became routine, a ritual, and when I saw that robin this evening I was instantly reminded of it.

That association with robins is a legacy left to me by my parents. It’s funny how, even though that era is now gone, I remember not so much the robin, but how I felt when we all saw it for the first time, over twenty years ago. The wonder. The quiet respect.

I’ve been thinking about legacies lately, not least because on Saturday, over two hundred activists will come together in Mansion House to remember the influence that disability activists, both past and present, have had over our lives. That space will allow us to reflect on the achievements of the past, and to be thankful for what has been achieved in the name of people with disabilities thus far. But it’s also an acknowledgement that once Saturday’s event is over, we need to continue looking forward, keep striving towards true equality, ensure that our voices are always heard.

Like the robin from my childhood, some of us thought that these people were invincible, that no matter what, they would always be there. My memories of those who I will be remembering on Saturday are sometimes the only fuel that keeps me involved in activism. Sooner or later, we are going to have to look at the future, and it can be scary when someone we looked up to, be that a parent or sibling in the literal or figurative sense, is no longer here to guide us.

When it seems that all the greatness of the world is slowly disappearing, will we be able to find the courage to look within ourselves. to see what we can offer? And if we can’t trust ourselves to do this, who can we trust to educate our legacies to our children? That’s why we need to tell them about the past, the robin. We all need to know where we came from.

And sometimes we need a reminder, so that we may create meaningful legacies for them. We need to remember the past, not to live in it, but rather to use it as a blueprint to make our own mark in history.

 

 

 

 

 

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.

 

Man, I feel like a writer…

I am writing this blog today in the hope that after I do so, the inspiration that I need to fix the middle of my novel will magically appear and afterwards my office will feel like it’s full of unicorns and rainbows.

It’s been two years since I left my job and decided that I wanted to be a writer. I wasn’t under any illusion that doing this would ever make me rich. It wasn’t the money I was seeking, or fame or recognition or anything like that. It was the sense of feeling useful, productive, being able to see on a blank page exactly what I’d produced that day. Having tangible goals. Doing the unthinkable and throwing myself out there, feeding myself to the wolves.

One thing that I did wrongly anticipate was having a real sense of pride in what I do. I’m ashamed to say that although I try to convince myself otherwise on a daily basis, part of me feel like a giant fraud. Especially when people ask how the novel is getting on (‘How long have you been writing it now? Two years?! You must be nearly finished.’) Nope, nowhere even close. I now realise that I probably should’ve started with something slightly more manageable, like a collection of short stories, but I can’t backpedal now. I’ll finish this book if it kills me! (and by the looks of it, it probably will).

Another frustrating aspect of my life right now is that I can’t decide whether I should focus on activism or writing more. Obviously, in writing the novel, I’m tackling both at the same time which, if I wrote it properly, could start a whole new conversation about how we perceive disability as an issue in Ireland (okay, perhaps I am being a little overambitious, but better to aim too high than too low, right?). But then I can feel myself being pulled towards being a full-time activist, always trying to make a difference, and I think to myself: God almighty, what is it I want?!

I’ve also found myself looking at the job section in the paper/on websites a bit more lately and every time I do so, I can physically feel myself trying to repress my urge to write. You said that if you weren’t getting a steady income by the middle of this year, you’d quit. This makes me turn cold. Inner voice, stop talking out of your behind! I can’t quit. People will laugh at me, think badly of me, I’ll have to start all over again and anyway, if I’m ready to quit, what is this magical force that keeps bringing me back to the keyboard?

Maybe it’s organising an event to honour Irish Disability Activists that has me frazzled, but I have to admit that being involved in this project has prompted me to think about the legacy that activists such as Martin and Donal have left to us. I look at them and others, and at what they achieved and failed to achieve for us, and remember their unwavering passion and I think, how did they never lose their passion? How did they and so many others keep going even when they were told they were wrong? They used their voices with confidence; I hide behind a computer screen.

With my words, where I feel safe.

I know that I’m probably going to return to the workforce, sooner rather than later, but I’d rather do it with something to show for myself. Something tangible, preferably a novel or some kind of written portfolio. Something to leave behind. A legacy.

And I suppose, isn’t that what activists and writers have in common: the irrepressible need to leave their mark on the world? Seems they’re not so different, after all.

School lessons

So, Alison is back to school on Wednesday. I know not every parent will agree with me but I for one cannot work out where that summer went.

Kids have a tendency to surprise you, though. Just this morning Alison had expressed trepidation about going into Senior Infants. ‘The work will be too hard,’ she moaned at me while I scoffed at her. Ten minutes later she had orally completed the first twelve pages of her new Phonics workbook. With Alison, I’d be more concerned about her getting bored than struggling. If she were to get bored, she’d lose interest and thus would begin the descent of a slippery slope into delinquency and mischievousness.

I suppose I’m still aghast at how much she’s learned in the last year.  Her reading skills are better than mine were at her age (it pains me to admit this), and she spent the summer doing Tullamore library’s Summer Reading Challenge. (This is where kids are challenged to read ten books over the summer. She read forty, easily). She’s retained most of her Irish and has been randomly coming out with statements such as ‘Six plus five is eleven’.

So she’s doing well which is a relief, because I had concerns about her starting at just four and a half. But of course academia, mathematical prowess and literary genius is not the be-all-and-end all either.

As the daughter of a wobbly mummy, Alison has learned that it’s good to ask questions about disability, and boy does she!! ‘How come you could walk before without a walker, but not now?’ ‘Why do you use  a wheelchair when you can walk?’ ‘How come these footpaths are not ramped? That’s very dangerous.’ I’m raising a mini activist. Together we are becoming a force to be reckoned with.

In addition, Alison has learned to deal with having a sort of celebrity mummy. If she thinks people are asking too many questions, she’ll change the subject with a kind of ‘who cares about that auld has-been in the wheelchair’ attitude. It’s so normal to her that she can’t work out what all the fuss is about. I used to worry that my disability would drive away some of her friends, but actually I’ve established a rapport with them all and subsequently lost my wondrous tinge.

I’d also consider her to be kind. I’ve tried to teach her empathy, sort of ‘how would you feel if’ scenarios. She can identify if people are being unkind to each other and she tries to include people. Sure, she’s not perfect, and if she’s part of a clique she’ll get caught up in it. But she also knows when she’s in the wrong – she’ll look at me with her big blue eyes that say, ‘sorry mum, please don’t give out, I love you!’

And what have I learned? I’ve learned that there’s more to being a mum than the ability to run around after your child. I’ve learned that I am in fact not an alien and am just the same as other mums. This year, I’ve made the nicest mum friends whom I love chatting to and I no longer have any qualms about asking them to help me out with lifts to birthday parties. I’ve learned how to let go and share my hilarious parenting fails with them instead of constantly being worried that they will judge me as a parent or report me to social services!

I’ve learned to enjoy motherhood – I mean, really enjoy it. I’ve learned to love myself, and take care of myself. Whereas before I felt like a fraud, I now know that Alison and I mean the world to each other.

And isn’t that the most important lesson of all?

 

 

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.

Shoe shopping

…AND… whatever male audience I might have had is now gone. Oh well!

I’m a rare specimen, me. One of a kind you might say. For example, I HATE shoe-shopping. Apologies to my friends with screen readers who may have just been shouted at, but you need to understand the extent to which I hate it. I think I may hate it more than a typical man does.

See,  the thing is, because of the way I walk, I tend to wear away the inside of my left sole at an alarming rate. So, at most, I tend to get two months tops out of a pair of shoes or boots. And the complications don’t end there. Because of my awkwardness I can only choose from an extremely narrow selection of shoes. I’d like to think that i’d have a selection of shoes in my wardrobe but the reality is I only own two, maximum three pairs at a time.

So when I go shoe- shopping, I have to eliminate the following categories of shoes.

  • High heels, for obvious reasons. For those who don’t know me, I walk as if I’ve been on the beer for three days straight, all the time. If you’re ever looking for a TV extra for the part of drunk randomer, look no further.
  • Mules. They slip on so easily, and also slip off just as easily.
  • UGG boots, or imitation UGGs. There is just too much room to move around in there, and my ever-moving foot likes a little restriction. When I buy imitation UGGs, there’s usually a toe-shaped hole in the left one within five days of purchase.
  • Pumps hate my feet and refuse to stay on. I usually make the mistake of forgetting this until I’m at a wedding or function of some sort rummaging in my bag for hair bobbins to put around them and my feet so they don’t come off.
  • Shoes with laces: Listen, I’m 33 now. If I haven’t mastered tying laces by now, I’m not gonna.
  • Crocs: thankfully not fashionable but also won’t stay on feet.
  • Sandals/flip flops: My toes hate being exposed. They get embarrassed, they’re shy. When wearing these my feet tend to ball up, leaving me frozen on the spot. Lovely.

So what’s left? Granny sandals with Velcro straps, sensible boots with chunky soles and slip-on runners. These are a nightmare to find  unless they’re in season. It’s horrible.

Well, okay. I admit my footwear issues are not as pressing as famine or the threat of terrorism, but having the right shoes is kind of important as far as I’m concerned. They make walking and staying upright a hell of a lot easier, meaning that come the end of the day, I’m not as fatigued as I would be with the wrong shoes.

I believe it was Atticus Finch in To Kill a Mockingbird who said you never know a person until you walk around  in their shoes. So, my friend, if you’re wearing high heels, you’d better have a camera ready to send the clip into You’ve Been Framed.

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.