The Secret Agony of Postnatal Depression

WIN_20151128_192444

(Me and my little princess)

Sometimes the hardest thing about being a writer is writing about real feelings, about your reality. Once the words are out there, you’re opening yourself up to merciless scrutiny and possible criticism. But I’ve decided that in order to be free of the most horrible experience of my life, I have to write about it and share it with you. And I’m so happy that I’m finally in a good enough place to do it.

(written Wednesday 22 June 2016)

It is one o’clock on a Wednesday afternoon. All is quiet, now. We’ve spent the whole morning talking to a lovely woman who is interested in our story of how we, two parents with various degrees of Cerebral Palsy, found the whole experience of having Alison and whether we would have any advice for the so-called medical professionals if they ever come across a case like ours again.

We are not a ‘case’, of course. We are people. Real people with real feelings. Talking about how we were doubted when we had Alison and when we brought her home first is always draining. As a person who loves to bottle things up and have that bottle explode at the most inopportune times, talking openly and honestly about what is going on in my head is something I hate to do.

So why now? Well, maybe it’s because no matter how hard I try to deny it, the fact that I had postnatal depression will always be part of my identity. I will never forget how I was made to be so afraid that I had to go through it alone, even though I know that some friends tried to help me. They couldn’t of course. I had to help myself.

I was nine weeks pregnant when I self-referred to a physiotherapist and an occupational therapist. I wanted to be the best for my baby, I wanted to improve. I wanted to show people that I was capable. Deep down, I wasn’t sure if I would be. The last time I’d cared for a baby was when my little sister Alex, six years younger than me, was born. Dressing and feeding a doll wasn’t going to be the same thing, I knew that.

Anxiety lingered where excitement should’ve resided. Our Public Health Nurse started visiting when I was twelve weeks pregnant, asking questions that I didn’t know the answer to. How are you going to feed the baby? Change it? Carry it? (Apparently my plan to wheel the child around the house in a buggy was inappropriate; a sling was more suitable. How was I going to get the baby in and out of a sling?) It didn’t really matter – they had come up with a solution, they knew best. Sure what did I know? I wasn’t a medical expert, like they were.

But if they were medical experts, then I was treated like a medical marvel. We’ve never come across this sort of situation, I was told countless times. What did they mean, this ‘sort of situation?’ Surely I was just a normal woman, having a baby? I was told that I’d have to be under general anaesthetic to be sectioned, and it was only the week before the section when we discussed our concerns with the anaesthetist that a spinal was considered. Then there was the apparent issue of me being  left alone with the baby. I spent months trying to illustrate how, if I got help with basic tasks such as bottle making, washing and cooking, being alone would not be a big deal. I later heard about how everybody was apprehensive, watching me with bated breath, expecting me to fail.

Alison Mary Fitzgerald was born on the 9th February 2012 at 11.52am, weighing a sizeable 8lbs 4oz. She was, and remains, the most beautiful person I’d ever met. As I held her in my arms I was blown away by her huge blue eyes, her physical strength and her flawless, unblemished skin. Immediately after the birth the lactation consultant showed me how to breastfeed. I hadn’t really considered breastfeeding, nor had I any interest in it, but Alison took to it easily and I watched her ‘help herself’ it occurred to me that if I could do it, then I would always be useful. Even with my horrible, mangled body I would still be useful.  Even if I couldn’t do anything else for her, I could do this. And if I  was her main source of food, then no-one could take her away from me.

Warped thinking, yes, I know. But I wasn’t thinking straight at this stage anyway.

I was a fog of hormones, crying from hormones and  tiredness. But finally, everything was in place. We became claustrophobic in that small hospital room, the three of us, and by Monday, all I wanted to do was go home. There was no medical reason why this couldn’t happen. John Paul was staying with a friend and that morning, it was just me and Alison in the hospital room. I looked into the little cot and sang ‘Baby, now that I’ve found you’ to her, studying her little hands, her thick head of hair. I promised her there and then that I’d always do my best by her, that I’d always love her. just as I was doing this the anaesthesist came in, grinning.

‘Do you remember calling me a legend last Thursday?’ he asked. ‘I recorded it in case you don’t!’ He checked my stitches, which were healing  nicely. ‘So are you off today? There’s no reason why you can’t. You’re recovering well.’ My heart soared. The ward manager agreed.

‘You’re doing really well,’ she said, ‘and we need your bed. What time is your husband coming in?’

‘Ah, soon,’ I said, packing my belongings. ‘Can’t wait to go home!’ But I was nervous too. I’d never handled a newborn baby before, and here I was, her primary caregiver, and like so many first-time mums I didn’t have a clue what I was doing.

The trouble was that I wasn’t like other first time mums.

I was just after feeding Ali when the head midwife came in. ‘I’m going home today, aren’t I?’ I said excitedly, gesturing at the half –packed suitcases on my bed. The midwife smiled, her lips pursed and shook her head.

‘Not today,’ she said. ‘You see, we have… concerns that you might be a danger to your baby, that you might drop or hurt her. What we’ll have to do is ring your social worker, your public health nurse and the Centre for Independent Living again and just verify what supports you’ll be getting, see if they think you’re ready to go home.’

‘But I’ve already done all that,’ I cried, my words an indecipherable screech. ‘Everything’s organised. I spent my whole pregnancy getting everything ready. How can you say we’re not ready? I can’t believe this is happening…’

The midwife shook her head. ‘I can’t understand what you are saying,’ she said. ‘Can you take out your phone and text out what you’re saying, like we agreed last week?’

Tears fell out of my eyes as I looked at the perfect sleeping baby beside me. I could hurt you, I thought to myself. I shook my head dismissively and instead rang John Paul, not letting Alison out of my sight for a second.

‘You have to take her,’ I sobbed down the phone. ‘There’s no point. They won’t let me take her home. You take her, you look after her. I’m obviously the problem, so you take her.’

A startled and breathless John Paul burst into the hospital room fifteen minutes later. ‘All right?’ he said casually, looking at the nurse. ‘Sarah said that you won’t let us home with Alison…’

‘Oh no, that’s not what we said at all,’ the midwife gushed. ‘We merely wanted to make sure that you two would be fully supported when you got home. So the Public Health Nurse will be out to ye every morning…’ I waited for John  Paul to protest angrily, but he remained calm. ‘And she’ll be a great help, no doubt. We’ve also ordered Sarah a cloth sling which she can use to carry Alison in her wheelchair. It’s sixty euro, so…’

‘I’ll get that,’ John Paul said confidently, although I knew by his reaction  he’d no idea where it’d come from. ‘And all going well, we’re going home tomorrow?’

‘Of course,’ the midwife said, although I felt like a royal idiot at this stage.

Getting home, away from the maternity hospital, felt surreal. We arrived at our house where my P.A. had decorated the house with ‘It’s a girl’ signs. Our family was waiting inside, armed with presents for me and Alison. There was even lasagne, and cake from friends. It was lovely. But I still felt like crap, as if I’d escaped from prison and that at any minute the midwife would come and try to take me back.

And so I began the journey of motherhood constantly feeling like an imposter. As those early days wore on, I began to feel tired. The physical effort of breastfeeding took its toll, but I persevered nonetheless, determined to do it. It took me forty-five minutes to do a nappy change and outfit change, and the fact that Alison had reflux and spewed during each nappy change didn’t make the process any faster.

********************************************************************

My aunt informed me that now that Ali was born, I would always chart life events through the life of my child.

Alison was eight weeks old when I started to feel odd. I wouldn’t say miserable, and I didn’t think I was depressed. But I definitely didn’t feel like myself. I put it down to exhaustion, physical and emotional, as well as recovering from, as my aunt put it, major surgery.

One night, when John Paul was at work, I sat looking at  Alison in her buggy. She was crying frantically and I was bent over her, ready to pick her up. Suddenly I felt light-headed and the room started spinning. All I could see was Alison’s head smashing against the floor, blood splattering everywhere. They were right, I thought with trepidation, I can’t do this. I’m going to hurt her. I phoned my friend, and when she arrived I was holding Alison in my arms, shaking with the relief that she was okay, and that I hadn’t hurt her.

But one day I will, I thought, and they will take her off me for sure. It’s only a matter of time.

I say ‘one night,’ but in truth, there were many, many nights like this. And if it weren’t for this friend, I don’t know if I’d be writing this blog right now. She saved me from myself more times than I can count.

***********************************************************************

As part of my bail conditions, the Public Health Nurse came nearly every day, for nearly six months. We would try to look together, calm, pretend to know what we were doing. However, Alison had severe reflux which gave the Public Health Nurse the perfect excuse to drop by, sometimes twice a day, often unexpectedly, to weigh her. The house could be a tip. I could be wrapped in my purple and white bathrobe, curdled milk encrusted in my hair. To this day I firmly believe that Ali picked up on my nervousness, which in turn exacerbated her reflux to the point where she was throwing up whole feeds. She also had colic, but that was nothing compared to the pressure I felt to show people that I was able, capable.

‘Do you think it’s a cow’s milk allergy?’ I asked one day, as my heart ripped in two watching Ali spew another feed over yet another newly changed outfit. The Public Health Nurse smiled and waved her hand dismissively.

‘I doubt it,’ she said. ‘Do you know how rare that is?’

By Friday of that week, I’d had enough of this shit and brought Ali to the doctor, demanding a letter for the A&E in Mullingar, that I wasn’t going to be fobbed off any longer. It was the June Bank Holiday of 2012 and the hottest weekend of the year. We spent it in Mullingar hospital where the doctor finally prescribed Ali Nutramigen, a soya-based formula. I felt like kissing his feet in gratitude. Between the Saturday and the Monday Ali gained four hundred grammes and the heart-wrenching colic dissipated instantly. The colour came back to her face  and she became a happy baby, full of chat and smiles.

‘You see?’ my husband said as we came home from the hospital. ‘You are a good mother. You know exactly what you’re doing.’

I closed my eyes tightly and desperately wished it were true.

***********************************************************************

I went back to work in August 2012, for fifteen hours a week. Fifteen hours a week filled with anxiety, wondering how she was. Fifteen hours a week that I had to hand her over to someone else. Some days I would look forward to the break, until Alison left the office with the childminder. I knew I couldn’t have it both ways, but it was still so hard. It’s something I still struggle with, but I suppose every mother does, to some degree.

It was around this time that a horrible, mean voice moved into my headspace, and I was feeling too low and vulnerable to tell it to fuck off. Whoever this voice was, he/she/it was intent on destroying me. It was the voice that told me that I was going to drop Alison whenever I picked her up. The same voice told me that Alison was not safe in my care, that she would resent me as she got older because I wasn’t a normal mum. If I spilled something or knocked something over, the voice would never fail to criticise.

Alison turned one on 9th February 2013, and I’ve never felt relief like it before or since. Relief that I hadn’t caused her any serious harm or injury. Relief that she was home with us, celebrating her birthday in the company of friends and family. Relief that the first year was over. But I also felt anger. Angry that I had lost so much enjoyment with her because I was constantly worried about what others thought of me and my parenting skills. Angry that I would never be good enough for this little girl, no matter how hard I tried.

As Ali bent over her birthday cake and grabbed the flame, burning her little hand, I burst into floods of tears in front of my friends and family.

‘Don’t worry,’ my dad said, hugging me tightly. ‘Her hand is fine. She didn’t burn it too badly.’ I looked up at him and smiled, relieved that he didn’t know the real reason for my tears. Ali hadn’t been afraid to grasp that candle; she’d been strong and fearless. I’d felt that way too when I was pregnant. Now, all I felt was constantly afraid and so, so useless.

And my biggest fear was that somebody would guess how I was feeling, and threaten to take my little girl away from me. So I stayed silent, plastered on a smile and threw myself into the monotony of work and my daily routine.

***********************************************************************

I started to have thoughts of suicide, as they say, when Ali was eighteen months.

I’d no intentions of going through with anything, but I had it all carefully plotted out in my head, just as a back-up plan. Knowing it was there made me feel safe, happy even. (Don’t worry, there is no backup plan now. If there was there would be no way that I would even mention it on a blog).

John Paul and I would have a row, and I would storm out of the house, vowing never to come back. Sometimes I would take pills with me. Sometimes I would storm out and walk around for hours. I would come back. John Paul would say that I needed help, but we would both agree that we could not live under the scrutiny of nurses and social workers again.

He was tired, as was I. tired, and alone. So, so alone.

***********************************************************************

We moved house in 2014, to a bigger house with a lovely garden and lots of storage. And, it seemed, mirrors everywhere. We had no mirrors in the last house we’d rented and I found it difficult to deal with seeing my inadequate self everywhere I looked.

It was a tough year. My nephew died at thirty-four weeks gestation, which really affected me, having had my own baby just two years beforehand. I was grateful that Ali’s birth had been so straightforward, but also felt guilty because Kaleb’s should have been too.

Ali started crèche, which meant she was sick every week with one thing or another. It was an exhausting, sleep-deprived time. John Paul and I would stay up with Ali at night, then head into work the next day, frustrated when we weren’t able to function properly. And the voices spoke louder than ever, telling me I was useless, inadequate, nothing but a waste of space. I was constantly tired to the point where I myself was sick all the time.

One day I went to the doctor’s with swollen glands. I had had a tummy bug the week before, which had wiped me out completely. I sat in her surgery, answering the routine questions.

‘I can’t go on like this,’ I said. ‘I’m sick nearly every week, and I’m constantly tired.  I’m taking my iron. What the hell is wrong with me?’

‘That’s what having a baby does to you, I’m afraid,’ the doctor smiled. ‘Unless – well, how are you feeling in yourself?’

I stiffened. ‘I feel grand, great. Why?’

‘Sometimes physical symptoms can point to an underlying emotional problem,’ she said. ‘Has anything particularly stressful happened over the last while?’

‘Well, we moved house, and my nephew died this year,’ I explained. The doctor nodded.

‘That’s probably what’s causing it,’ she said. ‘Just try and take it easy.’

As I left the surgery, I thought of how one of my college friends had recently sought help for postnatal depression and how she had bravely posted about the whole experience on Facebook. And I remember reading it and thinking oh, if only I could be so brave. So strong. So honest with others, and with myself.

***********************************************************************

By July 2014, I was exhausted. I was ringing in sick at least once a week, and producing no work whatsoever in the office. All I could do was stare mindlessly at the screen, scrolling through random Independent Living sites, taking nothing in.

And I hated myself for this lack of productivity. (You’re nothing but a waste of space)

I would come home in the evenings, and spend time with my lovely daughter, playing on the floor with her, silent tears running down my face from the pains that radiated from every fibre of my body. (You will never be good enough for her)

I wanted my house to be perfect, my daughter to be perfect. But how could that be when I wasn’t perfect? When I looked in the mirror, all that I saw was a deformed nobody, an imposter waiting to be exposed. I was a terrible wife and mother, and I was convinced that the two people I loved more than anything in the world deserved better.

‘Where do you think you’re going?’ my husband asked, his face shocked. It was half one in the morning, at the end of July and I had been in bed. Now I was awake, looking at him from the doorframe of the sitting room, fully dressed under my bathrobe. And all I saw was mess. In reality, it was a couple of dirty dishes, but it might as well have been thousands of dirty dishes; I hadn’t the energy to deal with them. If only someone had given me the memo that a couple of dishes wouldn’t signal the end of the world, but there and then, I couldn’t deal with it.

I couldn’t deal with anything.

‘I’m off,’ I screamed, jumping into my wheelchair. ‘And you can go and fuck yourself for all I care. I won’t be back. I mean it this time.’ John Paul tried to stop me but I tore out past him and headed out into the darkness. I didn’t know where to go so I wandered around aimlessly for hours, watching the cloudy sky gradually become brighter. The grey haze enveloped me as I sat beside the canal, and cried, and cried and cried.

Later that morning, I went into work, sitting mindlessly in front of my laptop. After about an hour two of my colleagues collared me.

‘You look dreadful,’ said one, surveying my dark circles. ‘Something has to give. You can’t go on like this.’

‘You need a break,’ agreed the other. ‘Before you crack up.’

My initial reaction was oh shit, I’m going to lose my job, but they were right. I couldn’t go on like that. We agreed that two months off work should help me to feel like my normal self.

Within two weeks of being off work, I felt more like myself again. which was odd, because I thought that I would hate it. I absolutely loved being home with Alison, and getting to know her better.

And then, I started writing again.

It began as a few words here and there in an empty Word document. As the weeks wore on, I began to write out the thoughts in my head, and they didn’t look as stupid as they sounded in my mind. I wrote exactly how I felt, staring at the words until I smiled. This was how I felt. And as I explained in a previous blog, I began to understand why I’d felt so shit; so many things had happened that I’d repressed, including the death of my mother and the way I’d been treated after Ali was born. I started to blog about them and it made me feel happy and peaceful in a way I hadn’t felt in years.

***********************************************************************

I didn’t write this very long preamble because I want sympathy. I wrote it so that I can say that that horrible part of my life is over. I’ve never been happier, although loving myself is going to take a bit longer. I still have bad days, but everyone has; none of us are perfect. The main reason I’ve written this, however, is because it breaks my heart to think that there might be other women out there, suffering as I did, afraid as I was to speak out and ask for help. I know it’s easy to say this now, but there is no shame in having PND. It’s an illness, a horrible, horrible illness, and nobody should have to wrestle with it alone. And if you’re reading this and can relate to any of the above,  please ask for help. I’ve heard that there are so many great counselling services out there and I’ve read and heard so many success stories. Don’t hold off – just do it. You are worth so much to so many people.

Most of all, you owe it to yourself. Because despite what those head demons are constantly trying to tell you, you’re actually pretty damn fantastic. You really are.

Advertisements

In Memory of Veronica Guerin

‘This is Irish journalism’s darkest day. For the first time, a journalist has been murdered for daring to write about our criminal underworld and daring to chronicle the lives of the brutal people who inhabit it.’ (Aengus Fanning, Irish Independent, 27 June 1996)

It has been twenty years since Sunday Independent journalist and mother of one, Veronica Guerin, was gunned down and brutally murdered on the Naas Road. Even though I never knew her, I think about her on her anniversary every year, and as an aspiring journalist I find myself asking the same question: was Veronica’s murder, described by the late Aengus Fanning as ‘an attack on democracy’, an act of bravery or sheer naivety on Veronica’s part?

I was twelve years old when the news of Veronica’s murder was reported on the six-one news on the 26 June 1996. I remember how my mother put her hand to her mouth and my father shook his head in disbelief. Even though I had no real interest yet in the nitty-gritty of Ireland’s politics, I knew that this shooting was significant. The images of the bloodied, smashed up car will stay ingrained in my mind forever. It was the first time that I’d ever heard of a journalist being targeted in such a brutal way, and the first time I’d considered that being a female journalist could be dangerous.

Two years later I would sit up way past my bedtime to watch a documentary detailing the extent of the drug problem in Dublin. I saw images of people shooting up in broad daylight, some who had committed petty crimes in order to fund their addiction. Some of them were in their early teens just as I was. This was my first introduction to what the sordid world of heroin and cocaine addiction looked like: needles everywhere, people sitting in their own excrement, so high on drugs that they barely knew what day it was.

Drug addiction and supply were still widespread problems, even after Veronica’s murder, but at least the problem had been thrown into the consciousness of the public who could no longer hide behind the predictability of their everyday lives.

Veronica was not merely a journalist, she was also a wife and mother. Bringing a child into the world is a great responsibility and protecting them from evil is an even greater one.   I’m a chicken. My writing is important, but I wouldn’t be willing to risk the safety of my child over it. But ironically, Veronica was most likely thinking of her son and trying to ensure that he wouldn’t grow up in the same horrible culture. Sadly, in trying to protect her son, Veronica became the target of three shootings (one through a window at home, one gunshot wound to her leg and the fatal shooting through the window of her car on the Naas road).

Indeed, there is much debate as to whether her actions were heroic or plain ridiculous. Emily O’Reilly, writer of Veronica Guerin: The Life and Death of a Crime Reporter was accused by many critics as deliberately setting out to sully Veronica’s name in the name of professional jealousy. In her book O’Reilly challenges everything that we know and believe about Veronica. She says that Veronica lied about her age in order to be  accepted into the Ogra Fianna Fail, and points out how she was accused of fabrication when reporting on the Bishop Comiskey Case. In addition, Veronica is depicted as being selfish, putting her career before the safety of her child. She continued to write despite being repeatedly targeted by gang members, even after John Gilligan *allegedly* threatened to rape and kill her son.

However Cate Blanchett, who played Veronica Guerin in the movie of the same title, says that such criticism of Veronica is too harsh, and in an interview she pointed out that being ‘a female journalist, the questions of her as a wife and a mother [such as] ‘how could she do this’ were asked in a way that wouldn’t be asked of a man.’

Veronica is now dead twenty years, and her husband Graham Turley observed in a recent interview with the Irish Mirror (published on 8 May, written by Blaithnaid Murphy) that: ‘Twenty years down the road we are back to stage one. It is getting to the stage where there is literally a shooting on the streets every day of the week.’ Drug abuse in Dublin City centre has again reached an all-time high to the point where the provision of safe injection centres and the legalisation of cannabis are slowly creeping onto the political agenda. Despite Veronica’s efforts, there is more focus on the petty criminals rather than the drug dealers who are undoubtedly profiting massively from the sale of these drugs.

So, if this is the case, was Veronica’s death in vain, or more to the point, did she bring about her own fate by playing with fire? I don’t think so, to be honest. If we really believe that it was partly Veronica’s own fault that she was murdered, we essentially exonerate her murderers of full responsibility for their crimes. Unfortunately, we live in Ireland where we typically try to understand the motives of those who break the law. On the whole, we try to see the best in people, including those who commit such despicable crimes.

True, Veronica Guerin may not have been perfect, but at the end of the day, she was the victim of the greatest crime there is – murder. Her methods may have been invasive and unorthodox, but she was still trying to do her job. Perhaps she did take on more than she could handle, but she paid the ultimate price. And her legacy will live on through her family, her articles, television documentaries and films, reminding us that drugs will always be a problem in Irish society unless we find a way to disempower drug barons and provide proper rehabilitation options for recovering addicts.

If Veronica’s life and death has taught us anything, it should be that the efforts of one person really do matter, and that if we join together and create a unified front progress, however slow, will eventually follow. But this won’t ever happen if we sit back and do nothing.

RIP Veronica, and thank you for trying to make our country a better place for children like yours and mine.

How writing saved my life

It’s on days like today, when the house is quiet except for the squeaking of my swivel chair and the hum of the washing machine that I wonder whether it was such a marvellous idea after all to hand in my notice and quit a job where, if I’m honest, would’ve kept me forever as long as I did my job and didn’t cause too much trouble.

And, to be fair, it wasn’t a bad auld job either. I did a bimonthly newsletter. I loved working directly with our clients. I did booklets, a film documentary, a fashion show, even a twenty year celebration event. By the end  of it I was left wondering what else I could do. I was out of ideas, and I didn’t want to waste their time and my own plundering along with nothing to show for it. Not good for the company, or my ego.

Indeed, they say that a lot of the reason that people write is for a good ego massage, and being honest that’s true. There’s nothing that makes me smile more (apart from my husband and daughter, of course) than seeing nice comments under my blog or the likes flying in on Facebook and Twitter. (Yes, everyone,  there’s a subtle hint in there somewhere – can you find it? I need your approval as much as I need oxygen)

But writing can also be therapeutic. It can help a writer make sense of himself/herself and his place in the world. It’s often a medium through which thoughts can be transferred through the safety of a piece of paper or computer screen, without having to face people, without the (immediate in my case) fear of being misunderstood.

I wrote here before in a blog called ‘Facing my Demons’ (9 December 2014) about the agonising time we had after having Alison, about how we were closely scrutinised, how we felt alone  and how we could tell no-one how we felt or what we were going through. Unfortunately, this contributed to me developing Post-Natal Depression. Feelings of anxiety, inadequacy, hopelessness? Definite signs of PND. Did I go to the doctor? No. Tell anyone the full truth of how I was feeling? No. That would’ve been the sensible thing to do, wouldn’t it? The fact was that I didn’t know how exactly to describe these feelings when I didn’t understand them myself. After flying off the handle one night, and leaving home, vowing never to come home again, I realised that I needed help. But I’d had counselling before, several times, and the experiences were largely negative. I didn’t feel I could go and tell a stranger my innermost fears. They would judge me, maybe think that I was an unfit parent.

Instead, I took two months off work, and within a week I was already starting to get bored. So I took out my laptop and starting typing out the first thing that popped into my head, much the same as I did when I started writing at the age of seven. No filters, no censoring myself. The words just flew out, like long-term imprisoned dragons celebrating their freedom. Seeing how I felt in black-and-white in front of me made me feel complete. This was me, and how I felt. It wasn’t disgusting, it wasn’t abnormal – in fact it was normal and understandable. Taking ownership of those words made me feel like myself again. When I started the exercise, I thought that I had reached thirty without achieving anything much, but when I read back how I’d been to college, held down a job, got married, had a daughter, lost my mum, been terrorised out of Portlaoise, a lot of things began to make sense, and I started to truly understand who I was and how much I meant to my daughter and husband, and my family and friends.

I’ve been out of ‘official’ work for a year now, and like every mother up and down the country I’m racked with guilt. You feel guilty if you are working, and feel guilty if you aren’t – you can’t bloody win, can you? (Well, I am working, I’m writing a novel. If you’ve seen the Family Guy sketches where Stewie asks Brian how his novel is going, you might appreciate how it feels to be me on a daily basis.) But I am happy. I’m determined to make a writing career for myself. And I have to stop comparing myself to others and instead remind myself that I’ll get there in my own time, and also tell myself that I’ll get another job, at some stage.

For now, however, my main job is to stay well and to be the best mum I can be to that beautiful rascal of mine. And it’s a job that I love and that I take more seriously than any other job I’ve ever had.

In Memory of an Inspirational Hero

 

I absolutely despise the use of the word ‘hero’ when describing a person with a disability.

I find the term irritatingly patronising and often inaccurate. British Comedian Laurence Clark is making a living by challenging the notion of the ‘inspirational disabled person’, reminding people through his routine that we (people with disabilities) do not need to be congratulated by strangers for achieving the everyday things that other people do on a daily basis, such as going to college, getting married and having kids. In fact, he is so passionate in his refusal to be labelled an inspiration that he named his 2012 stand-up tour ‘Inspired’ and voiced his desire to be recognised as a ‘normal’ person who does normal things.

As a person with Cerebral Palsy myself, I can appreciate how annoying it is when people  have low expectations of you as a disabled person, but I must confess that even I have my heroes. And this particular man, who has been dead twenty-one years yesterday (14 March), has made such a lasting impression on me, even though I’ve never met him, and obviously never will.

His name? Ed Roberts.

I wasn’t going to write this blog because I didn’t want people to think I was dull or lame, but I’ve read back my previous blogs and I think we’ll all agree that that ship has sailed. Ed Roberts was known as the ‘father of the Independent Living Movement’, and it is down to his collaboration with other activists during the 1960s and 1970s that many of us enjoy a Personal Assistant Service today.

When I used to spend days researching the history of the Independent Living Movement, what struck me was the lack of progress for people with disabilities prior to the 1960s.  Just twenty years beforehand, people with disabilities were being murdered en masse by the Nazi regime (it is estimated that 700,000 disabled people were murdered during World War II). The 1960s, however, was a ‘radical’ period of social change, when people in America started to speak out against injustice, and marked the start of women and ‘black’ people as they were known starting to take radical steps to achieve equality.

Ed contracted polio  in 1953, at the age of fourteen. He never recovered, and was essentially paralysed and left dependent on an iron lung. As time went by, he could spend time out of the lung using a technique known as ‘frog breathing’.

 Given the culture of the time, Ed was deeply ashamed of his newly acquired disability and stayed at home, completing some of his high-school education over  the telephone. His mother eventually forced him to go back to school for a few hours a week, and Ed learned that being different was not necessarily a bad thing. He began to see himself as a ‘star’ and wondered how he could use this to his advantage.

Like many people with disabilities, even today, Ed and his mother Zona had to fight so that Ed could complete his high school diploma. The school initially refused to award Ed his diploma because he couldn’t get his driving licence or do PE. This decision was overturned after much protest from Ed and Zona. Ed then decided that he wanted to study at the University of California in Berkeley, and was famously told, ‘We’ve tried cripples before and it didn’t work.’ Eventually he was granted campus accommodation, a small wing of the university hospital, the only place that Ed could put his iron lung. Ed agreed on the condition that the space was treated as a dorm, not a hospital.

Ed’s admission into the University paved the way for other people with disabilities to stay on campus too. They formed a group, dubbing themselves ‘The Rolling Quads’ and started enlisting the help of ‘attendants’ (now known as Personal Assistants) who they recruited, trained and fired themselves. This was a radical concept – disabled people directing their own services. Ed referred to it as ‘cripple power’, and the idea of the person with the disability directing services remains central to the Independent Living Philosophy. Ed helped to open the first Center for Independent Living in Berkeley in 1972.

As you can tell, I’m fascinated by the Ed Roberts story, and always have been. He was one of the pioneers of a service that I, and so many others, enjoy today. Yet in spite of positive progress in Ireland, namely the opening of Dublin CIL in 1992, many people with disabilities in Ireland still live in fear of their Personal Assistant Hours being cut. Many are institutionalised in their own  homes, having a service only to help them up out of bed and put them back into it. Ever since the recession hit Ireland, the concept of empowerment has disappeared and instead we are left to prove, time and time again, that our PA services allows us to live, not just merely exist.

And for me, that’s why I will always try to honour the memory of Ed Roberts – not because he was some absolutely godly man who is my inspiration, but because he was an ordinary man who was prepared to fight for the ordinary things that sadly, many people with disabilities still can’t afford to take for granted – PA Services, education, employment. The only way to achieve true equality is to come together and shout loud to make ourselves heard. We must be Ed’s legacy so that our children can be ours.

To me, Ed isn’t just inspirational. He is so, so much more than that, and deserves to be remembered as more than that. He and his colleagues gave us the opportunity to pursue our dreams, live in our own homes and have our own families. Above all, he taught us never to accept the status quo, as equality will never be achieved through complacency.

#mebeforeableism

 

This isn’t going to be a long blog post (I hope). It’s one of these posts that I’m writing solely to motivate myself to do a bit of writing, and to unblock my brain (apparently, ‘writer’s block’ does not exist; I attest otherwise).

There’s been a bit of a shitstorm online over the last few days about the film, Me Before You, which is based on a novel of the same name by Jojo Moyes. Disability Activists have been  blogging furiously, slamming the (mis)representation of disability both in the novel and the film. The disabled character, Will, has chosen to avail of assisted suicide in Switzerland because now that he is paralysed following a motorbike accident, he doesn’t think that life is worth living. And *spoiler alert*, that’s exactly what he does at the end of the novel.

Is it wrong that I want to slap a fictional character across the face and say, ‘Cop the f**k on. You have to use a wheelchair, but you’re not the only wheelchair user in the world. You’re only in your twenties. Ah here?’ Is it wrong to want to slap the other characters for not slapping him across the face?

Over the last few days I’ve read Extraordinary Lives, a book compiled and edited by the Irish Wheelchair Association’s Joanna Marsden (who also edits the Spokeout magazine, a quarterly publication issued by the IWA), which paints some interesting pictures of disability. All of these stories have one thing in common: each person strives to be integrated into a society which sees them as deviant. They challenged stereotypical notions of being disabled and set about removing barriers to integration. They excel, not in spite of their ‘impairments’, but in spite of a society that doesn’t always think they are capable. Many of these people were instrumental in advancing the Independent Living Movement in Ireland.

I’ve been an active member of the Independent Living Movement for almost ten years now, and I worked in the area of Independent Living for nearly seven of those. During this time I saw first hand my fellow disabled activists protesting against cutbacks to Personal Assistant Services. I witnessed the introduction of medical card charges, the cutting of the Household Benefit Package, the scrapping of the Christmas Bonus.

I also watched what was going on in the UK, and what continues to happen: disabled people being refused their Disabled Living Allowance (DLA) because they weren’t ‘disabled’ enough to qualify; people being forced onto Jobseeker’s Allowance (JSA) after being told they were ‘fit for work’ (even though it has transpired that some of these claimants died afterwards either from terminal illnesses or suicide); disabled people being portrayed as ‘scroungers’ because of the benefits they claim,
leaving them to become victims of hate crime.

It has been hinted that Leo Varadkar is going to bring in a similar system over here, despite the negative press it  has received in the UK. Well, good luck to you Leo. I know of so many disabled people who have openly declared themselves as being available for work, and yet still struggle to secure paid employment. I know others who can’t afford to work because they will lose their medical card, making earning money a futile exercise. And you can launch as many disabled employment schemes as you like, but what we really want is to be accommodated in a ‘normal’ working environment, and recognised for our skills rather than offered a tokenistic job for the sake of massaging the unemployment figures. (Many disabled people don’t show up on the live register because they are on Disability Allowance not Unemployment Benefit).

So going back to Me Before You. On one hand it is just a story written by an author, doing her job as a storyteller, telling the story of her characters, one of whom just so happens to have a spinal cord injury. Fair enough. On the other hand, the reaction to it from  the disabled community should highlight how frustrated many of us are as being portrayed by Hollywood as hapless victims with nothing real or tangible to offer those around us. it’s time for us to stand up and show that it’s not that we are not worthy to live in society but rather that society must adapt and accommodate not only our physical needs, but our emotional and social ones too. We must teach people that our impairments do not make us tragic, and to be comfortable around disability.

Me Before You was written by a non-disabled author. Let’s not be afraid to write our own story.

* I feel I should point out that I use the word ‘disabled’ to denote people who are disabled by the society they live in, not their individual impairments.

y