Hero or Villain?

So, I just thought I would give you all a little update into how the writing is going. Well, at this exact moment in time I, like so many of you, am fit to melt into a puddle, which isn’t helping. Before this week, however, I was plodding along until once again, I found myself disappearing into a cul-de-sac. Interestingly, I know in my head where this is going – finally! – but it’s not translating to paper as well as I’d like. This is a common predicament for writers, not unique to me. After hacking away for a while, and adding words purely to beef up the word count, I decided to take a break. I gave myself permission to step away, justifying my decision with advice from writer Sam Blake (The lovely Vanessa Fox O’Loughlin) that sometimes you need to allow your subconscious the space to put elements of the story together. I’ve spent the last week or so doing just that.

A number of things have rubbed me since reading in Cork nearly a month ago. I began thinking about the advice my brilliant mentor David Butler gave me during our last session. “You’re really being too hard on Rachel,” he said, which annoyed me a bit, because I think Rachel deserves it. My protagonist can be lazy, selfish and quite frankly, a bit manipulative. She uses events of the past to justify her shitty behaviour towards those around her.  Some days she annoys me so much that I want to shake her. Why doesn’t she just try a bit harder?

The funny thing is, David is absolutely right, of course. Everyone in my writing group loves Rachel and is rooting for her to overcome her demons. They think she’s feisty and assertive in all the right ways, and they seem to look forward to the next instalment, which is flattering. Rachel even got a few laughs at the West Cork Literary Festival, which was such a good feeling. My daughter didn’t go to the reading, but she read the extract in the back of the car afterwards. Her eagle-eye spotted every detail; she is an avid reader who I’m sure can memorise many of Jacqueline Wilson’s or David Walliams’ books. After she finished, my daughter asked me “Mammy, why does everyone hate Rachel?”

“Did you not hear what her boss said to her? She’s been missing appointments, coming in late and hungover. She’s not a reliable employee.”

“Yes, but she seems to care about her clients. I know she’s not perfect, but I can see where she is coming from too. People need to back off her.”

My eyes narrowed. “Hmmm. Have you been talking to David?”

After taking a break for a week, I went back and read over the story again. I could see what David and Alison were saying; I am quite hard on Rachel, and she deserves some happiness. Because Rachel and I are similar in many ways (the Cerebral Palsy, the struggle to fit in at work, and hating being called “inspirational”), I’ve been trying to detach myself from her a bit. I did a one-day course with Michéle Forbes in April on creating characters, and now I understand why all my characters act the way they do. Including my antagonist, Sister Anthony.

For years, I’ve said that I base Sister Anthony not on a person but rather an attitude that I as a disabled person have encountered all my life. That voice that tells us as disabled people that we are less than (I’ve written about internalised oppression before), that in order to be accepted, we need to change and conform. These ingrained beliefs – personified in my story through Sister Anthony – can be difficult to challenge unless we question them, where they come from, and how damaging it can be to believe them.

I know you probably don’t know what I’m on about, so let me explain. (Oh, please reader, be kind; this is so hard to write and admit to). The reality of aging with impairment is something that is seldom talked about. I was lucky to have availed of services throughout my childhood – physio-, speech- and occupational therapy. However, in Ireland, once you turn eighteen, access to these services becomes restricted, if you’re lucky enough to have access in the first place. I’ve always been lucky in accessing services, but only because I’ve pushed for them.

In recent years, I’ve experienced aches and pains beyond anything I ever had in my childhood or teenage years. I still do my physio and exercise, but my body is starting to fight back against some of the things that I used to regard as normal. For example, I used to hoover and mop on my knees, because that way I didn’t need to worry about balance and coordination. I love ironing – my mother taught me the importance of perfectly ironed clothes – but now an ironing session might warrant an hour’s rest afterwards. I’m not giving up. I’ve always been independent and that’s not going to change. But I have to admit that sometimes I worry that this decision will have unsavoury consequences.

And on Friday, I had a very upsetting moment of realisation. Upsetting to the point where I cried – a lot. Yes, I am like Rachel – stubborn, imperfect, obstinate and determined. But I have also become my own Sister Anthony. And Anthony is not a pleasant person. She’s pushy, and often extremely cruel. Her expectations of Rachel are unrealistic and the by-product of living in an ableist society, one where the medical model dictates that self-improvement and conformity are key to being accepted as an equal. 

I’m glad I recognise this in myself, because it means that I can heal. I need to give myself, and Rachel, a bit of a break. Heaven knows we’ve both put up with enough to last us a lifetime, and for the first time since I started working on this story seven years ago, I’m starting to think that we both deserve a happy ending. And for Rachel, this will just be a matter of writing a couple of thousand words. Mine will only come with an acceptance of my limitations, and this will take a lot more work. But I will get there, and hopefully finish this godforsaken novel in the process.

(Not today, though. It’s far too hot!)

The Play It Forward Experience

It was Friday, 16 July 2021. We were temporarily residing in a first-floor apartment in Tullamore while waiting for some much-needed renovations to be completed in our house. I remember that it was the middle of the heatwave, because I was watching Alison, our daughter, playing outside from the apartment window. Suddenly, my phone rang. I saw Damien Walshe’s name, the CEO of Independent Living Movement Ireland, flashing on the screen. My mind was cast back to the occasions where I’d applied for jobs with ILMI and he had the unenviable duty of ringing me, telling me that I hadn’t been successful.

So when I answered, and Damien asked, “Can you talk?” I’d already played out the spiel in my head: Don’t lose hope. Keep writing. You are good at what you do. In fact, I was so busy steeling myself against disappointment that I almost missed what he was actually saying to me.

“Did you just say that I’ve been chosen?”

“Yes! Well done, Sarah!”

I was flabbergasted. “Are you sure it’s not a mistake?”

This went on for quite some time, much to Damien’s exasperation I’m sure, but later that evening, an email from the gorgeous Nidhi confirmed the good news: I was an official Play It Forward fellow. More significantly in my head, I was a writer who had been awarded a bursary, a real bursary.

I’m sure many artists who apply for bursaries feel the same way I do. It wasn’t about financial gain for me (although I’ve never been known to refuse a few quid). Writers, like other artists, don’t pursue this kind of work because they have visions of rolling around in mountains of cash like J.K. Rowling. In terms of money, I don’t earn enough to keep food on the table or to afford anything remotely luxurious. Most people write alongside their day jobs. 

What being awarded a place on the inaugural “Play It Forward” programme did for me was it validated what I do on a daily basis. I’ve always been reluctant to use the word “writer” to describe myself. It feels a bit arrogant to be putting myself in the same category as the likes of Marian Keyes and Margaret Atwood. Yet, when I was awarded the place on the programme, suddenly I felt that I had permission to identify as a writer. 

It was strange, because in reality, my creative process has remained largely the same. I still endeavour to spend three to four hours at my laptop a day, churning out words, as I have done for the last seven years. The difference was now there was accountability. Suddenly there was no time to sit around daydreaming, because my mentor David Butler would be expecting to see approximately ten thousand words of my novel every couple of months. This forced me to pay closer attention to the words I put on the page, meaning that I have to produce the best quality work I can. Being on the Programme allowed me to write a small piece for the prestigious literary magazine, The Stinging Fly. It also enabled me to avail of a number of one-day online courses, as well as two longer ones: “Novel Writing” facilitated by David Butler and “The Confidence Booster” by Anne Tannam. I learned so much on these courses, and in fact we all enjoyed the Novel Writing one so much that when David’s teaching ended, we all came together and so the group continues to meet to discuss and critique each other’s work every two weeks under our new name “People’s Republic of Writing.”

Perhaps the most significant part of being a Play It Forward fellow was having the opportunity to read our works-in-progress at the West Cork Literary Festival. I remember when I was sent an overview of the programme last July and saw that we would be reading to a real-life audience, my first thought was “Okay Sarah, you have a year to try and think of an excuse to get out of this.” I’d never been to the Festival, but I’ve followed it on social media since I first started writing and thought of it as somewhere for established writers. Real writers. You know, writers who actually know what they’re doing. Published writers. Before I knew it, the day was upon me and instead of making excuses, I found myself in the car beside my husband, navigating our way to the beautiful Bantry.

We’d been holidaying in Trabolgan in East Cork, but it was still a two-hour drive. When we arrived in the hotel on Wednesday evening, we were both fit to collapse into bed. I was unpacking my bag when a white envelope caught my eye. It was sitting on the table and it had my name on it. Inside was a bookmark, a lanyard with “artist” written on it, and a copy of the programme for the week. My photograph was in it, alongside my other Play It Forward fellows, Gonchigkhand Byambaa, Neo Gilson, Sara Chudzik and Majed Mujed. There were also details of other events featuring authors including Lucy Caldwell, Louise O’Neill, E.R. Murray and Marianne Lee. The name dropping could go on and on. I only wished I could’ve stayed for the week!

A photo of a map of Bantry, a West Cork Literary Festival bookmark, a lanyard saying “West Cork Literary Festival – Artist” and the West Cork Literary Festival Programme Brochure

Finally, on Thursday 14 July 2022, almost a year to the day that I was offered my place on the Play It Forward programme, I was preparing to introduce “Rachel” to the world. Gráinne from Skein Press told me not to be nervous, that I was reading to friends. Usually I would have someone read on my behalf because of my speech impairment, but that wasn’t going to be accepted as an excuse to weasel out of reading! The words were behind me on the screen. As I read, I became Rachel. People laughed, which was such a relief. It was such a pleasure to hear my fellow writers read about their experiences of marginalisation and belonging. Stories of cultures combining, memories of home and family members, themes of difference and trying to fit in. I was in awe of the talent of my fellow writers, and I hope to see more of their work in the future.

In five months, the Play It Forward Programme will come to an end, but I will always be grateful for this wonderful journey. I would like to thank all at Skein Press, particularly Nidhi, Mahito, Grainne and Fionnuala; the Stinging Fly, particularly Declan Meade; my outstanding mentor David Butler; the Irish Writer’s Centre; Independent Living Movement Ireland and the West Cork Literary Festival for affording me this unique opportunity. I will never forget it as long as I live.

The Big Imposter

Forgive me reader, for I have sinned: it has now been four months since my last blog. I was browsing through it today and decided that I need to make more of an effort to post more often. But I have been writing, I promise. In fact, I decided that I needed to give my novel another chance, after leaving it on the back-burner for the last three years while I got distracted by various projects and courses. I did the Certificate in Disability Studies in 2019 with the view of trying to get another job in the disability sector, and all I have got from that so far is further confirmation that I want to be a full-time writer. Lucrative? Not in the slightest, but I love it. I’ve been doing it for seven years now, with no-one prodding me to write. I’ve gone out of my way to prove that the statement “working on my own initiative” on my CV is true, that’s for sure. And when I look back on my writing career as a whole, I’m proud of what I’ve achieved, how many people I’ve reached and how many opportunities I’ve been given, from Independent Living Movement Ireland (ILMI) in particular (a big thank you once again).

Yet, when the opportunity came to push myself a bit further, I was reluctant. In June, ILMI joined forces with Skein Press and The Stinging Fly, offering a bursary to an emerging disabled writer. I eyed the advertisement with relish, but dismissed it initially. It wasn’t a good time: our house was being renovated and we were living twenty minutes away in Mountmellick, and we were coordinating the renovation as well as trying to keep Alison’s routine normal. The whole ordeal was so overwhelming that I had to step back from activism before I burned out. Suffice to say, it was a busy time, and when I threw the first ten pages of what I would usually term “my excuse for a novel” into the ring, the last thing I expected was to get an email two weeks later to say I’d won.

Reader, I felt euphoric. It was the middle of the July heatwave, and I brought Alison for an ice-cream so chocolatey and stodgy that we needed full showers afterwards; the pack of baby wipes didn’t cut it. I was so proud of myself. I had done it: everything I’d written since 2015 had been leading up to that moment.

But the next morning, after I had sent my “yes please and thank you for this opportunity” email to Nidhi Eipe from the Play It Forward Programme, I felt a sickness in the pit of my stomach. Why did I do that? I won’t be able for it. I’m not a real writer. No way am I good enough for something like this. Nidhi sent me a list of potential mentors from which I had to pick someone to work with. A list of established authors, with their work published, who knew what they were doing. I panicked, and drafted two emails. One was to Nidhi to say thank you but clearly there had been a mistake and I wasn’t the woman for the job. The other was to the two facilitators of a group that I’m part of called Writers Ink, and I wrote that even though I had been awarded this bursary, I wasn’t sure how I was going to maintain a pretence of being a half-decent writer and that I was terrified of making myself look like an idiot.

Thankfully, I didn’t send either email, as I would have succeeded in looking like an idiot. Instead, I stepped away from my laptop and took a breather for a few days. How was I going to shake this feeling of being a complete imposter? How was I going to overcome this feeling of sheer terror?

And then it came to me: I would have to fake it. I would have to pretend that I was a competent writer, capable of writing a novel. You see, the trouble is that I have never really taken this writing thing seriously. I’ve been told by people that there are some hidden gems in these pages, and yet I treat it like a diary, something I think no-one will read (perhaps taking the adage “write as if no-one will ever read it” a bit too far). In reality, despite how far I’ve come, I don’t feel like a “real” writer, deserving of any attention, positive or otherwise. The only thing keeping me going is coming to my laptop every day, telling myself “I can do this,” then typing as fast as I can before I change my mind, or overanalyse what my character is doing.

I’ve been allocated a terrific mentor, author and poet David Butler, who makes me smile: he loves Rachel, my character. Better still, he gets her, which I wasn’t expecting this early in our mentoring journey. He has been so encouraging on this novel-writing journey which can often feel so lonely, and now that I have more (though not full) control over my imposter syndrome, I can take his compliments as well as his suggestions for improvements and feel a sense of pride in my work.

I would like to thank ILMI, the Stinging Fly, the Play It Forward team, Skein Press and David Butler for this incredible opportunity. I won’t let you down! 

…Hopefully, if I keep telling myself that, it might turn out to be true.

Would I be Writer?

Having a lot of free time on our hands, all of a sudden, can be quite a dangerous thing. In recent days I find my mind wandering into dark, shady corners that I would normally protect it from, and thoughts that can become all the more sinister when overshadowed by a global pandemic. These thoughts vary from day to day. Lately I’ve been giving much thought to my career choices. At first, these choices were both sensible and socially acceptable. I did a good Leaving Certificate and decided to study English Literature in Trinity College. In fourth year, i was presented with another choice: to throw myself into my studies and get a good degree, or to compile a portfolio impressive enough to earn a place on the MA Journalism course in DCU. I didn’t have the energy to do both to the standard I might have liked, and I wept for two days when I got the rejection letter from DCU.

Maybe writing’s not for me, I thought. Maybe it’s just a hobby. It would be too difficult to try and pursue a writing career.

So I applied for jobs. Many jobs. The rejection emails and letters piled up on my desk as I continued to send application after application. It wasn’t impairment related as I never disclosed my impairment on initial application forms. Being unemployed can leave one feeling unhinged. I just wanted something, anything. My prayers were answered when Offaly Centre for Independent Living offered me a job. A good job. If I played my cards right, a permanent job. I was so relieved. I did everything I could to hold onto my job. It took the birth of my daughter for me to realise how unhappy I was. I was a PRO, in charge of the monthly newsletter. I was writing lots of words, just not the words I wanted to write.

I stayed for seven years. I stayed because it was safe.  I stayed because despite being seemingly incapable and inadequate, I strongly believed in the philosophy of independent living. I stayed because I thought that no one else would take me with so little experience. These thoughts wreak havoc on one’s self-confidence and belief.

But underneath it all, I still wanted to be a writer. There was a major flaw in my aspirations, however: in order to achieve this, I was going to have to write. i was going to have to be interesting. I was going to have to be honest about some things, both with myself and others. When I survived a nervous breakdown in July 2014, I knew things had to change. I knew that I would have to take a risk and show my words to real, breathing people.

The blog – this blog you’re reading now – was only ever intended to be a temporary thing. It wasn’t supposed to be a disability blog, or a blog about activism – it was supposed to be my ticket away from all of those things. As time passed,  however, it became ever more apparent that those two parts of me – writing and activism – could not be separated. The urge to communicate the real message of Independent Living and equal rights swelled within my veins until the dams could hold no longer, bursting all over the keyboard. I began to despair at my lack of control. I wanted to be a writer, not “just” a disability writer. I fought the urges, and lost. An article about someone “bound” to a wheelchair, the perpetuation of a victim narrative that no self-respecting disabled person would consent to be a part of, would bring me back to the keyboard, typing in a fit of rage. I felt I had a duty to add to conversations that were about me yet exclusive of my voice.

I fell into a rabbit hole.

“Be careful of being pigeonholed. It could destroy your career before it starts,” I was warned.

“This disability stuff can get pretty heavy for a blog,” another person told me. Still, I couldn’t take their advice. An invisible magnet always drew me back to independent living and activism. Even now, that can get annoying, but I’m tired of fighting against writing what comes so natural to me.

As I mentioned earlier, lately I’ve been pondering the word “writer” and whether it really applies to me. I’m not a weekly columnist. I don’t have a published collection of poetry or stories. I’ve tried to write the same novel three times, with each attempt ending in me leading the character into a cul-de-sac so deep that metaphorical suicide seems to be the only way out. So have I really earned the lofty accolade of writer? I would be inclined to say, no.

My vision of being a writer was having the ability to sit at my desk and stare at the screen in awe of my own words. My vision involved churning out poem after poem, story after story, without a moment’s hesitation. It involved generous pay cheques and prestigious awards, but above all,  I thought being a writer meant feeling secure and confident in sending your precious darlings into the world. That there would be a point where I could produce a piece of work that I was happy with and confident with. I haven’t reached that point, because as I’ve learned with the support of writer friends and various online communities, that’s not what being a writer is.

Being a writer is in fact tortuous. Many fellow writers that I’ve had the privilege of speaking with over the last few months still struggle within the clutches of inadequacy, imposter syndrome and crippling self-depreciation. It seems that a lack of confidence, a fear of being exposed is par for the course when you are a writer. It also seems that a lack of self–belief as opposed to a lack of writing ability is a writer’s biggest enemy.

I write because I can’t not write. I write because when I’m not at the keyboard playing with words, the clouds in my head become heavy and dark. I write because I enjoy putting different combinations of words together. I enjoy trying to capture scenes, emotions, outer injustice and inner struggles.

And, more often than not, writing keeps me from lingering in those dark corners.

Progress is progress is progress…

So, it’s the end of 2018, which in some ways has felt like the longest year ever, and yet I remember sitting here writing last year’s post as if it were yesterday. It’s been a busy year, and here are just some of the highlights:

I did a “Begin your Novel” course in January, and I now am 26,000 words into Draft 2. Maybe I’ll finish it before I die.

I had a couple of job interviews, none of which resulted in me getting a job. May I respectfully ask how in the name of chocolate are you supposed to get experience if you need said experience to get a job? Grrr. Grrr.

I threw myself into promoting Independent Living, which I still think is one of the most important philosophies in the whole world, as it recognises disabled people as equal citizens with rights and choices. I blogged about it and also made a video as part of the #IndependentVoices campaign. I also got to work with some amazing ‘young’ people (I don’t believe I fall into this category anymore) and found out that the future of the Movement is in their capable hands. In September we had the launch of Independent Living Movement Ireland, formerly known as Center for Independent Living Ireland.

I applied to be on the UNCRPD supervisory committee, but was not selected. I did get an interview though which was a huge honour.

I gave two lectures to university students – one about the use of technology to students in NUIG via Skype and the other was about parenthood and disability to UCD students (which was a bit impromptu as I stood in at the last minute for a friend who couldn’t make it). Nerve-wracking to say the least.

I wrote an open letter to An Taoiseach Leo Varadkar which was published in the Tullamore Tribune and also read out on Dublin South FM (Ger Scully and Sean O’Kelly, if you’re reading this, many thanks).

I started the Certificate of Disability Studies in NUI Maynooth in October, arrogantly thinking it’d be a piece of cake only to find it’s actually pretty intense with a lot of work and reading involved – oops! It’s so much more than getting the piece of paper for me, though. I want to understand the roots of the oppression of disabled people so that I know how to fight against it.  That said, I need  to stop speaking out in class. I’m coming across as a know-it-all and I will find myself getting beaten up for my lunch money. (If I don’t pass it, I may cry)

I’ve semi-committed to writing another monologue in the New Year with the talented Peter Kearns (Once this course is finished, though – my head is melted)!! Hopefully it materialises.

Oh, and I’m kind of doing some driving lessons! Think the instructor is a little dubious as to whether I can actually do it or not… only time will tell! Fasten your seatbelts!

And finally, I just about managed to keep this blog active (though don’t expect too much before my course finishes in April. Three essays and a group presentation will eat my time). Thanks to all my loyal followers for liking and sharing this pile of drivel. Your cheques are in the post!

Best wishes for 2019! xx

 

The Writing Process

Hi all, my apologies for not blogging here for a long, long time but believe it or not, I have actually been busy writing! I’m half-way through a ‘Begin Your Novel’ course (the time to do this, I suspect, was three years ago) and hope to dive into finishing Rachel’s story with more clarity. Deborah, if you’re reading this, we said the beginning of May for a first draft, but looking at the work I need to do that won’t be happening – sorry!

One of the other things I’ve been working on is an article about why I chose to write and my writing process. It was a great opportunity to promote myself as a writer and it will be published in the Spring edition of The Irish Wheelchair Association’s SpokeOut.  While everything I put into the article is completely true, I did make some omissions to the realities of the writing process. Here’s what a typical day might look like

9am – Arrive at my desk. My diary is open in a deliberate attempt to get me writing straightaway, complete with a pen to encourage me to jot down things straightaway. Ignore said diary and open emails instead. It’s important to know what skills my cousin endorsed me for on LinkedIn. Ooh, writing… oh yes, right…

9.30am Open Word and start freewriting. It’s great to get the old juices flowing. I love writing, it’s awesome.

10am – I did not know that your one Sarah from Corrie, Tina-whatever-her-face is, actually went out with Ryan Thomas who plays Jason. Oh, and that vicar Billy is going out with your man Daniel – wow he’s gay?! Oh all right, this has nothing to do with my novel, oops

10.20am – Back to work.

11.15am – That dryer has been beeping for the last ten minutes. I must turn it off because it’s wrecking my head.

11.30am: [ding] Who’s messaging me? Oh, it’s Ken from college. Writing back to him surely counts as work, him being a published writer and all. He’s sharing his knowledge. It’s imperative I don’t ignore him.

11.45am: 500 words written. Of pure and utter waffle! This is embarrassing, I’ve been working since half nine!

12.00pm: I’ve spend the last fifteen minutes rocking back and forth in my office chair, trying to calm myself down. But I feel I’m failing as a writer, and failing at life. Who did I think I was,  trying to be the next Margaret Atwood? I wonder did she ever feel like this. I’m going to quickly google and find out

12.15pm: Nope, probably not. I mean, look at all the books she’s written. Bet she didn’t spend all her time googling all her favourite authors. You know what? This internet’s nothing but a bloody distraction. I’m going to disconnect altogether.

12.55pm: 300 more words. Not bad if you omit the fact that I’m supposed to have my novel finished by the end of May. I feel sad. Cue more chocolate.

1.05pm: Nooooo, what is my laptop doing? Updates?! I don’t remember agreeing to this time. ‘Preparing to configure: 3%’. Why are you doing this to me?

1.45pm: Alison will be home in fifteen minutes but thank God the bloody laptop has finished updating itself, though what difference it makes I don’t know….. Oh no… no no no…my work, where is it? I’m opening Word but not seeing it… Recover unsaved files… no, that’s not it… agh! [enter string of expletives here]

2pm: Make note in my diary to write blog about my crappy day’s work, but maybe wait until I find it funny.

Of course, not every day is like this (if it were I wouldn’t bother writing at all) and if I had my wish, I’d be more organised and productive.

Then again, I’d also love to move to Australia, but that mightn’t happen anytime soon either.

 

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What’s the Story?

 

My Left Foot was on RTE 2 on Saturday night. I know it well because it was one of the ‘comparative’ texts I studied for my Leaving Cert (the film, not the book). Of course, me being me, I’ve read the book as well and it seems to be the voice of a man who very much came from an era where disability and impairment were problematic (okay, let’s face it, that’s every era – nothing’s changed there). Christy Brown is regarded as one of the most talented Irish writers of the twentieth century, and his name has become synonymous with triumph over adversity, literary genius, truly inspirational. And as a writer with Cerebral Palsy myself, I reflected on what it’s like to live in the shadow of such genius, and such brutal and cold oppression such as that endured by Brown.

If I had been born thirty years before, would I too have been relegated to watching life pass me by from under the stairs?

I’m constantly being told that I should consider  writing an autobiography, as Christy says ‘my own story’, and although I’m sure that every writer toys with the idea at one stage or another, part of me can’t see anything particularly extraordinary about my life. Unlike Christy Brown I was mainstreamed, and was very much a part of ordinary family life. I went to school, where I detested homework, and then to secondary school and college. I was always convinced that this was the status quo for other disabled people too, in spite of the fact that there were only two other students with physical disabilities in my school. (I say physical because there are also hidden disabilities like dyslexia, etc.)

Sixty years on from the publication of My Left Foot, I know that there are hundreds of autobiographies written by people with disabilities. In my home town alone, two men with Cerebral Palsy have published their own stories – Brendan Brophy wrote On Three Wheels and Dealing a Bad Hand and David Boland wrote Life from the Tip of My Tongue. Their style is different from Christy Brown’s, although some experiences are the same such as being in the CRC. My good friend Leigh Gath is currently extending her autobiography Don’t Tell Me I Can’t, the s\tory of her incredible journey as a thalidomide survivor (she has hands and feet, but not arms and legs) growing up in Newry during the Troubles, finding her identity as a sexual being and escaping from her alcoholic husband to finally find true love.

The progression of the perception of disability between My Left Foot and Don’t Tell Me I Can’t is intriguing. In My Left Foot Christy is preoccupied with his physical limitations and the now outdated terms he uses to describe himself, such as ‘cripple’ and ‘handicap’ whereas having been born thirty(?) years later, Leigh has a different perspective. Despite her specialised education at boarding school, she can clearly see from a young age that she is not the ‘problem’ but rather she lives in a society that won’t accommodate her needs. This frustration led her to become involved in disability activism and hard-core protests in trying to secure the rights of people with disabilities. It’s interesting to note that Leigh grew up in Newry, a community divided into Catholic and Protestants, while also inhabiting a world that endeavoured to reinforce the differences between disabled and non-disabled people.

Christy Brown’s perception of disability is now a little outdated. But one thing he must be credited for is that he gave permission to the disability community of Ireland (and the wider world) to tell their stories. Unfortunately at present we live in a world where these stories often exist in isolation. Christy Brown’s book may have garnered him worldwide recognition, but the rest of us face a new challenge. Disability has become so commonplace and integration is supposedly the status quo to the extent where, in the future,  writing your story from the perspective of having a disability won’t be enough to gain you credibility or respect.

Instead, it will be up to us as the future Christy Browns to push the message that disabled people in themselves are not problematic. It is society that disables, society that insists that we are different. A disability or impairment can never be overcome, but obstacles created by our society can be removed, if we put our minds to it.

And though I admit that I also am a sucker for a good old ‘triumph over adversity’ story, wouldn’t it be simultaneously strange and wonderful if we had more stories like: ‘Wobbly Yummy Mummy had no problems accessing mainstream school, or going to college, or accessing transport. She lived an average life with her husband and her kid. She sold a billion copies of her bestselling novel. The End.’

Okay, that’s a little boring. A little ordinary, even. But a good writer will always find the extraordinary in everyday life, if he or she is willing to look hard enough for it. My hope is that in the future, disabled  people will be perceived, and have the courage to portray themselves as the multi-faceted, complicated creatures we are.

And undoubtedly My Left Foot, both the book and the film version will be studied for decades to come, and my hope is that students will exclaim, ‘How could Irish society exclude Christy Brown and other disabled people for so long? Thank God Ireland ratified the UNCRPD!’*

*We haven’t, as of 23rd January 2018. The Minister of State with responsibility for Disability promised it would be ratified by the end of January. Forgive me if I don’t hold my breath.

 

 

The Repression of Rachel

It was a miserable September afternoon, the 19th if I’m not mistaken, and I was sitting in the Hilton Hotel in Kilmainham with a man I’d only met once before, having coffee in the middle of the day. Sounds sordid, but I assure you it wasn’t. It was purely business. You see, I’d written a monologue and I was due to perform it in the Mansion House at a massive disability event on 23rd September, but something about the piece felt hollow, and so Peter was trying to encourage me to inject a bit of personality into it.

‘Who is this character?’ he demanded as we reread the script, me eyeing him warily. Surely he wasn’t suggesting that my perfectly written script required an overhaul, four days before the bloody event?

‘What do you mean? It’s an everyman-type character.’

‘Well, where’s she from at least?’

I knew the answer to this. ‘She’s from Kinvara. My aunt lives just outside it, in the Burren. What I’ve always found interesting about Kinvara is that it’s in County Galway, kind of on the Clare border. I thought that it’d be a good metaphor for this character, who’s stuck between having a disability and needing services to live independently, and being capable in so many ways too. She’s confused and angry about how society defines her.’

‘And if she were an animal, what would she be?’ he asked. He’s lost it, I thought. Finally I answered:

‘A caged tiger.’

‘And what is it that fuels her anger?’

I composed a perfectly generic answer: ‘The way in with society treats her like an ‘other’ and as I said before, confusion about her place in society.’

Peter wasn’t happy with my answer. ‘Be more specific. What fuels your anger?’ A lump formed in my throat.

‘The way I was treated after my daughter was born.’ As I told Peter the story, my heart broke in the same places it did nearly six years ago when I found myself trying to convince medical ‘experts’ – as well as myself – that I was a capable mother. After I finished, Peter grinned.

‘Now that’s a story worthy of drama.’ I went cold. Was he seriously suggesting I get emotionally naked in front of two hundred people?

He certainly was.

And so, on the 23rd September, I performed a monologue that I had co-written (I don’t normally write in collaboration, but it’s time to open up my mind to new experiences) in front of two hundred people.  And since 3 December marks International Day of People with Disabilities, I thought it would be appropriate to share it with you today.

 

Rachel from Kinvara, by Peter Kearns and Sarah Fitzgerald

(Rachel is sitting in a chair and a woman dressed in a white coat is sticking labels on her – scrounger, handicap, vulnerable, waste-of-space etc)

Go away. I said – go away.

Just five minutes. five minutes – that’s all I ask.

And don’t worry, I won’t forget I’m not ‘normal’

I can’t forget – I’m not allowed to forget – we are never allowed to forget!

Well I wish I could forget you… this horrible pain you’ve inflicted upon me…

But you don’t understand. I tried – I did my best…

Yes – yes I did…

people never get to hear my voice…

You say it’s because ‘they’ – those ‘mainstreamers’ – won’t understand me.

Instead you encourage them to pity me, to try and ‘cure’ me….

I am broken because you have broken me.

You told me that the only way that my life could be better

was if improved, if I made the effort…

You promised me if my impairment were cured, that I could have everything…

I did the exercises  – stretched on the hard, sticky medicine ball and I endured your prodding and poking, cutting me open  and sewing me back together and – Look at me!

What do you see when you look at me?!

I don’t know how you look people in the eye…

Convince them that you know what’s best for me…

Convince me -and them – I know nothing about running my own life…

Will you be the one to bend down and kiss me on the cheek

And stick me into a Galway or Clare nursing home

Take me out to your AGM – that once a year ‘thing’ that makes you feel good

And then store me away like normies store their Christmas decorations in the attic –

Never to be seen from one end of the year to the next?

Am I starting to sound like a broken record?

Normies think that it’s okay that I have to give twenty four hours’ notice before using public transport?

That I would rather laze around on benefits than contribute to society?

Loads – I’ve shitloads – Loads to say… but hey…

It’s easier to believe I’m a freeloading scrounger rather than someone, who could be… someone….

Actually I am someone. Seven years ago I became a wife and two years later I became a mother. But you couldn’t let me have that, could you?

Don’t pretend you don’t know what I’m talking about.

You told me that I would be a danger to my own baby.

And… even after doing all the ‘normal’ things – the Leaving Cert – battling access in an inaccessible college – being a wobbly yummy mummy was taking that mainstreaming that little bit too far.

I caught you spying on me while I struggled in the playground with those shitty nappies, staring while I tried to breastfeed – your stares dried up my milk, your judgement lessened my embraces.

I felt worthless, damaged. For a long time you led me to  believe I was not a proper  mother.

Do you know how good it feels to have proven you wrong?

And how degrading it was to have to do it in the first place?

I have a daughter, she calls me mummy

I care for her, not the other way round. Of all the labels you’ve placed on me, it’s my label – my favourite.

She is my proudest achievement – my legacy.

And you won’t ever be able to take that from me – would you – could you?

So here I am… in Kinvara… neither Galway nor Clare… neither specialised nor mainstreamed – literally ‘idir eatha’ as the mystics would say, ‘between worlds’ – the hard world of your anxious clinical society and a place I know in myself, in the unfolding mystery of my daughter…

… and her name is… (lights down)

 

 

 

 

 

 

 

 

 

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.