Memories on a Birthday

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

 

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

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

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

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

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

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

 

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

 

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

 

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

 

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

Musical Inspiration

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

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

  1. Pompeii – Bastille:

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

   2. Talking ’bout a Revolution – Tracy Chapman:

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

3. Dear Mr President – Pink:

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

 

4. Just a Girl – No Doubt:

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

 

5. Turning Tables – Adele:

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

 

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

 

Source of all videos http://www.youtube.com. Copyright of artists named

I hate to be a burden, but…

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Anyone who knows me at all knows that the most important thing to me, apart from my family, friends and laptop, is independence.

As long as I can remember, I’ve always wanted to do things my way, to be control of my own life. I don’t ever remember my parents beating me out of the house or having to sit me down and tell me that my decisions were bad ones. And for the last twenty years, I’ve worked hard on developing this persona of being independent, capable of running my own life. Most importantly, I needed the freedom to make my own mistakes. Lord knows, I’ve made many.

When I reached my mid-teens, I realised that I never wanted to be a burden on my parents by virtue of my disability. I was raised in a country that wanted me to fit into a particular box, and when I didn’t, I was problematic. I felt that I wasn’t allowed to make mistakes, which resulted in me studying like crazy in school. By the time I was eighteen I didn’t want to be seen as a burden in any sense of the word. And I hope that I was no more a burden to my parents than my siblings

As I grow older and wiser, I learn more about the way the world works. For example, I now understand that progress isn’t linear. We as a society are in fact regressing in how we view disability. The ‘nineties marked revolution in Ireland, and people were encouraged to leave residential settings behind and embrace the big, bad world with a Personal Assistant by their side. The Independent Living Movement in Ireland brought promise of freedom and equality to disabled people. Most importantly, disabled people themselves are seen to be the experts in what they themselves need.

An important result of a disabled person having a Personal Assistance Service is that it relieves families of the ‘burden’ of ‘caring’ for their disabled relative. Language of dependence and inability becomes language of empowerment, enablement, choice.

And yet, twenty-five years on from the beginning of the Independent Living Movement, disabled people (so defined because we are disabled by society) are no closer to achieving equality in Ireland. Instead we continue to live in fear of cutbacks, in the hope that more vital services are not taken away from us. We stay quiet, hoping not to draw attention to ourselves. Our pleas and petitions to ratify the United Nations Convention of the Rights of People with Disabilities (the UNCRPD) disappear into an unknown wilderness.

In my opinion the reason why this hasn’t been ratified is not because of legislative changes that need to be addressed. It’s because we live in a country where disability has always been synonymous with charity and this enables government to continue to keep the ‘grateful cripples’ in their place. We shouldn’t need to sigh with relief when we  travel by train and there’s someone with a ramp, waiting to help us. We shouldn’t have people living in institutions whose peers are going  to Copper’s on a Thursday night. I remember the fun I had in my twenties, and the nearest I got to sitting in an institution was in the IWA’s Carmel Fallon Centre in Clontarf (even these were not sober times). Many would view my life as privileged, whereas I view it as an entitlement. One that admittedly has not come easily.

We shouldn’t need to accommodate and change our lifestyles and miss out on our true potentials, be this through education, employment or raising a family. Nor should we have to justify these choices to the HSE in order to get the proper supports we need to do these things.

Of course a single group or blogger cannot single-handedly change the current narrative of disability. We can all contribute, though. For example, the next time you throw coins absent-mindedly into a charity bucket, don’t resent disabled people or pity them; we don’t want to be objects of charity anymore, but we have been forced into this position because of government cutbacks. When you read a story about somebody with a disability in the media, look at the narrative voice: is it theirs, or someone else’s?

It seems that there are more pressing issues for the government at the moment: the US, homelessness, Brexit, the drug crisis. In the grand scheme of things, the rights of disabled people might not seem to be a priority. But if we don’t speak up, it never will be.

Because quite frankly, it’s disgusting that we live in a country that actively refuses to ensure equality for all its citizens. And none of us want to be seen as a burden.

Especially when, with a little consideration and respect, for both ourselves and our families, as well as granting us basic human rights, this burden could easily be lifted.

I am a WRITER!

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‘So, what do you do?’

This is a question I get asked all the time, and although it’s nearly been two  years, I’m still embarrassed by it

Yesterday I agreed to do an interview with an undergraduate studying for her final year in Psychology in DCU. She was a lovely girl, ambitious, and easy to talk to. She reminded me of myself in my younger days.

She wanted to examine the factors that influence or hinder people with disabilities in accessing employment. I knew it would be a little cringey; I’m ten years older than her, practically a relic, and I’ve voluntarily thrown myself back down the career ladder (not that I was far up to begin with, but anyway).

She asked me if I’m actively looking for work, and I said yes. (Three rejection letters this month alone, in fact). I know what kind of angle she was looking for: my employer’s premises wasn’t accessible, I needed extra technological accommodations, I would become fatigued if I had to work full-time (there’s an element of truth to all of these). But these were not my sole reasons for not looking for work.

Puzzled by the end of the interview, my companion asked me again, ‘So, is there anything else I need to know? Like what do you do in your spare time?’

I shrugged. ‘I’m pretty active in the Independent Living Movement,’ I said, then I lowered my voice, as if I was divulging a dirty secret. ‘I’m also trying to write a novel.’

My companion perked up. ‘You what?’ she stammered.

‘I’m working on a novel. I don’t know how it will turn out, but it’s taking up a good deal of time at the moment.’

My companion shook her head. ‘Fair play. That sounds like a lot of work.’

‘Well, it’s certainly not as easy as I thought it’d be when I started it!’ She  laughed, and I relaxed.

I think nowadays as mothers, a lot of us feel pressure to prove that we can do and be it all. I’ve been  at home with Alison for two years, and working on my writing in this time. This way I can have the best of both worlds. I can work as much or as little as I am able. I’m pretty happy, but still wary of how people perceive my choice to do this.

And to be honest, I don’t know why I care. For now, I’m doing something that is working out well for me and my family.

I don’t know if this will work out, if my novel will ever get published or if writing will ever be the career I’d imagined it to be.

But for now, I am a writer, and a mother, and delighted to be able to do both.

My 2016 Appraisal

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Because I’m now my own boss, I have to monitor my own progress. This can be a disaster. Sometimes I think I’m doing much better than I actually am, while other times I think I have failed miserably at life. So, in trying to determine whether 2016 was a success or a flop, I did what any smart self-employed* person would do: I made a list of my original goals and did a realistic assessment of how I performed and where I need to improve. Here goes:

 

(1)    Get into shape

Ah yes, this old chestnut. I joined Aura Leisure Centre in Tullamore in November 2015 and for a while went twice a week, once a week, once a month… I’m doing my physio twice a week/when I remember but I recently purchased a treadmill which I use at least four times a week. Or I was, until I came down with this horrible virus thing that is doing its best to wipe out the Irish population. I admit the last time I used it was two weeks ago. DON’T LOOK AT ME!

Verdict: Fail, I know, fail. But I’m trying. God loves a trier, right?

 

(2)    Write a novel

I saw how award winning novelist Louise O’Neill wrote two novels in as many years and thought hey, we were in the same class once upon a time, so logically that should mean… Nothing. It means nothing. I will not be publishing two novels in two years, or possibly ever, for that matter. This novel is my baby, so much so that I hate telling people about it for fear that they’ll say it’s unpublishable. I also have to write the middle of it which I’ve been procrastinating by writing shitty little blogs like these.

Verdict: Well, I’ve worked on  the same project for eighteen months, and I haven’t deleted it – that counts for something, right?
 

(3)    Give up chocolate

Yeah, this hasn’t happened. I will be the embodiment of Death by Chocolate. I have zero self-control. In order to be successful at this in 2017, I must somehow get rid of the four remaining boxes of chocolates lying around the house first. Once these are gone, I’ll have a fighting chance. It’s only logical.

Verdict: Fail.
 

(4)    Update this blog regularly:

Firstly, I ask you to discount the first six months of the year. I was blogging elsewhere, on a far less accessible website (all hail WordPress). July and September were not great, admittedly, but considering I’ve been working on a novel as well, I don’t think it’s been too shabby… right?

Verdict: Pass (Yay! Go me)
 

(5)    Find a new job:

(Job as in paying job) No I haven’t done this yet. Bad Sarah. But I have done a job interview skills course and a CV preparation course so, you know… Hopefully in another twelve months… (Of course part of the problem is that I should be trying harder. I know, I know, my husband is so lucky to have me)

Verdict: Meh…

 

(6)    Do a Creative Writing Course:

Yes, I did this, and got a Distinction Diploma in Creative Writing. That’s something I suppose….

Verdict: Pass.
 

(7)    Start driving:

No this hasn’t happened yet, but I’ve passed my theory test, so it’s probably advisable to stay off the road in 2017.
 

(8)    Learn how to cook a meal for the freezer that doesn’t involve mince:

Yup, I’ve done this. Beef stew! (With beef pieces, not mince). And……… shepherd’s pie (oops, that involves mince). I know, my culinary skills are just fantastic.
 

(9)    Cut down on social media:

Aw, but then how would I share my literary genius with you all? I did close my Facebook account for like half an hour. In my defence I permanently deleted my page a few weeks ago, (or so they claimed) but when I signed back in I was back online, no questions asked. I think it’s time to admit that social media owns us.

 

(10)Be the best goddamn armchair activist I can be: 

I’ve passed this with flying colours I think. When I was researching the progress of the disability movement in 2016, I had to look no further than my own Facebook page. It looks like my old job (which included raising awareness of disability issues on social media) is going to take longer to leave me than previously thought. The difference between sharing stuff on my own page and work’s page is that I don’t hold back in giving my tuppence on what I read. I suspect people are bored of me but I don’t care. I’m committed to the perusal of equality for people with disabilities. No more, no less. We’ve also made progress in ensuring that the recommendations as outlined in our Access Review (that is, the Laois/Offaly Leader Forum’s Access Review) has been implemented. I’ve also committed to helping the National Independent Living Movement in any way I can.

 

Overall verdict: Not a bad auld year. Must try harder** in 2017. Happy new year!

 

 

*desperate, approval-seeking writer

**way, way harder

Mastering the Art of Loss

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Losing someone you love isn’t a one-time lesson, it’s a process that one must endure for the rest of their lives.

‘The art of losing isn’t hard to master’ Elizabeth Bishop, ‘One Art’.

 

No-one will argue with the statement that in 2016, we’ve lost a lot of people from the celebrity world. People who had such an impact on our lives, even though we never knew them. People who we looked up to, maybe idolised. Some people that we felt we knew personally. There’s no sugar-coating it: bereavement is cruel. Nothing can prepare you for that sudden void that it creates, and nothing ever fills that void, even if you try to.

Grief doesn’t believe in having a timespan, either. This will be our eighth Christmas without our beloved mother (and today is her fifty-ninth birthday) and I’ve already spent four weeks steeling myself mentally against crying like a sap every time I hear ‘Fairytale of New York’ because it was her favourite Christmas song. And this year particularly I’ve felt her slip further and further from me, because I’ve had to grieve for her repeatedly over the last twelve months. My brain frantically clutches onto fragments of memories I have of her like a man overboard clutching onto an inflatable raft.

First, there was David Bowie, on the tenth of January. I’m not a diehard Bowie fan, but Mum was. She used to tell stories of how she styled her hair like his, and there’s photos of her wearing a cross around her neck as he did. According to Mum, Bowie dictated what Mum wore in her late teens/early twenties, one outfit (if I remember correctly) was an orange top with yellow trousers  (which she got caught wearing by one of the Sisters in the hospital in which she was working at the time). Bowie’s death brought those memories back instantly and that day I mourned for time that couldn’t be recalled.

Four days later, Alan Rickman died and it brought back memories of a family tradition long forgotten: the four of us ‘kids’ meeting on St. Stephen’s Day in Mum’s house, eating crap and watching Harry Potter. Some years that would be the only day that we were all together. Alan Rickman was also in Love Actually, where he plays a love rat. I watched that film with Mum and there’s a scene where Rickman’s wife (played by Emma Thompson) has discovered her husband is having an affair (she discovered some jewellery in his pocket but she was given a Joni Mitchell CD for Christmas instead). In this scene, she listens to Both Sides Now, one of mum’s old favourites and even now, even though I’m expecting it, this scene breaks my heart.

In between the deaths of two absolute comedy legends (Frank Kelly’s on the 28 February, my husband’s birthday, and Victoria Woods’ on 20 April), another absolute comic genius, Ronnie Corbett, died. Every Christmas my mother snuggled on the couch and tittered at the antics of The Two Ronnies reruns. She’d probably seen every episode before, but she still laughed until she cried at them.  And after she died, whenever I saw Ronnie Corbett, I saw her and the big smile plastered across her face.

More recently, the passing of Leonard Cohen (11 November) suddenly reignited that sense of loss that each day, I try to keep buried inside me, along with a sense of panic. I explained in last year’s instalment of Mum’s Birthday Blogs that my way of dealing with particularly stressful things is to push them into a black hole and pretend they’re not happening. Thanks to the nervous breakdown I had two years ago, I now deal with what I’m feeling as it comes, though I must admit old habits die hard. And this year, what I’ve been wondering is how much I actually remember. How much of it is real, and how much I’ve fabricated.

For example, her voicemail message which I rang incessantly for a year after she died. What was it exactly? Was it ‘Sorry I can’t take your call?’ Was it ‘Sorry I missed your call?’ Not important, I know, but you’d think I’d remember that much. Her favourite singer as far as I’m concerned was Joni Mitchell but it might have been Alison Krauss, Elaine Paige, Mary Chapin Carpenter. I’ve no idea what her favourite dinner was because she cooked so many. Every year, as the sense of loss heightens, my memory of who she was becomes entangled with who I would need her to be today.

Of course, there are things I remember. Silly, insignificant things. Like the way we used to stop at KFC in Newry every time we went to Belfast (there was no KFC in Tullamore at the time). The time she bought a collection of Harrods Beanie Babies in the pound shop in Athlone. How she used to paint her pictures slowly, using bold primary colours, giving them thought, time and care. How you weren’t allowed to talk during Casualty or Holby City (we didn’t have Sky+). How glamorous she looked after putting on makeup and how she was the envy of so many women in town. How she had a brooch to go with every outfit, even in the noughties.

And today, on her fifty-ninth birthday, I remember thinking how she was invincible, how she’d be around forever, how I couldn’t see my life without her in it nagging me. And yet, here I am, fielding questions from her almost five-year-old grandchild who would’ve loved her Nana Una.

‘Mummy, was Nana Una pretty?’

‘Yes she was honey, very pretty.’

‘Was she a good cooker like you?’

‘A brilliant cook, she did lovely stews, lasagnes and roast dinners.’

‘Did Nana Una like art?’

‘Yes, she did, and she did lots of paintings and drawings like you do.’

‘I bet you miss her very much.’

My dear Alison, you have no idea how much.

Happy birthday Mum. I was never going to be able to stop you slipping away from this world, but you will never slip away from our hearts. And I know that even if all the other memories fade, we will always be left with love.

Birds of a Feather

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“Men make their own history, but they do not make it just as they please; they do not make it under circumstances chosen by themselves, but under circumstances directly encountered, given and transmitted by the past. The traditions of all the dead generations weigh like a nightmare on the brain of the living”.

Karl Marx (1979)

 

 

I carry the weight of a dark and cruel history on my bony little shoulders.

Every day, I fight a small battle in some shape or form. Sometimes it’s because somebody has skipped ahead of me in the queue in the shop. Sometimes it’s a waitress asking my husband what I would like for dinner. Sometimes it’s the need to feel that people take you seriously as an activist.

It’s all too easy to forget that I’m not the only one who’s perceived as different, that I’m not the only one fighting for equality in a society that indirectly labels me as inconvenient. If you think I’m being dramatic, just look at the recent coverage of Johanne Powell’s story (Johanne Powell is a mother and carer to her severely impaired daughter, Siobhan). I’m not disputing Johanne’s right to her story, but surely Siobhan, and so many in her position, should be given the chance to somehow tell their story too?

Every time I hear a story, be it about a wheelchair user who couldn’t board a train, or a person living in an institution simply because their home isn’t adapted, I feel an inexplicable anger, and also a sense of being victimised. I always think to myself: what if that had been me? It’s only luck that it isn’t me. And what can I do about it?

I often think about my upbringing and how often my parents used the word ‘fight’, ‘It was a long fight but Sarah made it into primary school.’ ‘It was a fight but we got Sarah botox treatment’ (for my legs, not my face – this is all natural). For many parents, and subsequently children, everything is a fight in a world where cutbacks are the norm. Sadly, parents still have to fight to have their disabled (by society) children accepted into mainstream school. Fight for the supports their children need to excel. And I ask myself – what exactly has changed in fifty years?

Sure, some things are improving – for example, Tullamore is becoming more accessible, students with disabilities are now going onto third level education and employment, sometimes setting up their own businesses, having families of their own and so on. But none of this falls into our laps. It is hard work having to constantly prove yourself in a society that expects little of you. And, *apols for harping on about this,* the fact that the United Nations Convention of People with Disabilities has not yet been ratified nearly ten years after it was signed is a clear indication of how (un)seriously our government views the needs of people with disabilities.

As far as I can see, we have internalised our history – please correct me if I’m wrong, but –

  • The word ‘handicap’ derived from the term ‘hand in cap’ is deemed offensive now, but is technically still correct as every year thousands of people with disabilities live in fear of losing their Personal Assistants, losing benefits and medical cards. As long as I worked in the disability sector, the Disability Federation of Ireland and the Centre for Independent Living made pre-budget submissions (elaborate begging letters) outlining the damage further cuts would cause. Obviously government didn’t care;
  • Despite one damning HIQA report after another, residential homes are still alive and well. Minister Mc Grath reckons that they will all be closed by 2020, but according to a HSE report published in 2011, more people are entering residential home than leaving them;
  • I’m a young’un, but I could safely bet that many disability activists were campaigning and protesting for the exact same reasons twenty years ago as we are now;
  • Disability/impairment is still viewed as one of the worst things to happen to you (cheers for that, Me Before You). it’s a tragedy that you wouldn’t wish on your worst enemy, and wouldn’t it be great if there was a cure, and have you heard of these robotic legs blah blah blah. It seems that cures are more favourable than respect, understanding and acceptance. What does that say about us?

I know that I am the sole author of this blog, but I’m not sure I’d have the confidence to blog at all were it not for the support of all my readers, especially those who have experienced discrimination as I have. So the next time you are raising a grievance, be it because you were excluded from a building or public transport, or because some prat doesn’t think you should be a parent, or because you’re being blocked from getting your dream job, you have a responsibility to keep fighting.

But don’t worry.

You are not alone.

You have all of us behind you.

Poem: Grand Achievements

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by Sarah Fitzgerald

 

Sitting down
Shoes exactly two feet apart
His breath becoming deeper,
His eyes focusing on nothing
But the task at hand.
With determination and tenacity
He held the little piece of plastic
In a pincer grip.
He bit his lip, channelling his concentration,
Ignoring the voices of the past
Swirling around him, whispering in eerie voices
Useless, failure, imbecile, waste of space.
He ignored his leg, which was jumping violently,
Trying to distract him.
His fringe was wet from the sweat of effort,
The pursuit of success. He could not fail.
Another deep breath, and with confidence and inner belief
He successfully
Pushed the button
Through the hole.

Meaningless rant on a Friday night

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I’m upset. And I know deep down when I’m upset that I should turn off the laptop, walk away and root out a tin of Celebrations from the spare room that ‘we’re saving for Christmas.’ But like a fool I can’t do that. I need to get this off my chest.

First of all, I’m upset with myself. I’ve been around for thirty-two years, you’d think with all of the physical and metaphorical knocks I’ve had in my lifetime my skin would be thicker. That stupid comments wouldn’t get to me.

Today, Ann Marie Flanagan, a disability activist from Clare, wrote a well articulated article for thejournal.ie about why Ireland urgently needs to ratify the United Nations Convention for the Rights of People with Disabilities. Unfortunately some of the comments on the article demonstrated the frightening ignorance of some of the Irish population. (I have said ‘some’ twice, I am not making generalisations, okay. Some of you are lovely). Yes, I know, thejournal.ie and trolls are well-known bedfellows. And like the gobshite that I am, I fed the greedy trolls.

One comment that was made was along the lines of ‘You need a PA to get things done and you thought it’d be a great idea to have a child?’ I don’t know this person from Adam, nor he me, but this isn’t the first time I heard this particular line. In fact, the first time I heard this was in the hospital the day after I had my daughter and I was walking to the toilet for the first time after the section. It wasn’t even a nurse that said it, it was an orderly (who we reported afterwards).  It wasn’t any of her business, but we weren’t going to go all angry  crip on her and run the risk of not being able to bring Alison home. Which nearly happened anyway when the head midwife suddenly, for no apparent reason, decided that we couldn’t go home because I was going to be a danger to my baby.

And that moment has never left me. I fought so hard to prove myself before Alison was born, and yet it wasn’t enough. And when I developed postnatal depression afterwards, I felt that I couldn’t seek help in case I accidently revealed some vulnerability and had my daughter taken away from me. There’s an underlying narrative to disability: everything is a struggle. That narrative begins from the day we are born. And I’m so tired of it, I really am.

I’m tired of biting my tongue every time someone comes over to Alison and says to her ‘are you looking after your mammy?’ I know it’s harmless banter, but I’m the parent, she is my daughter. She has her little chores but nothing like a carer’s role. And having a good PA service will ensure it always stays that way. Alison is very much a child, and will always be, because I am her capable mum. I have to tell myself this every day, and I’m sick of it.

I’m tired of explaining my personal choices to strangers, of having to reassure them that I know what I’m doing (I do have a Trinity degree after all) and having to wangle that degree into conversation to gain credibility from them.

I’m tired of the weight of history on my shoulders, a history that depicted disability as a fate worse than death, that it was perfectly okay to control disabled people and their families by denying them the appropriate services in order for them to live independently, which ultimately results in resentment of the disabled person by their families (Johanne Powell being the most recent example of this).

I honestly don’t know if I can change any of this stuff for the better.

But what I do know is that there’s a box of chocolates in the spare room, and while it won’t exactly change the world, at least I’ll go to bed on a (sugar) high.

Ireland and Disability: A Reflection of 2016

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International Day of People with Disabilities: 3rd December

 

‘Disability is not a problem to be cured, but a part of our identity and diversity’ – (Dynah Haubert, a lawyer in the US)

 

Are things really improving for people with disabilities in Ireland?

I’ve been picking my brains for the last two weeks trying to decide how I would approach this blog. As you may have guessed from the heading, today (December 3) marks an occasion called the International Day of People with Disabilities. As with Cerebral Palsy Day (October 5), I’m not exactly sure what having a specific day to recognise people with disabilities is supposed to achieve. Then it occurred to me that perhaps it isn’t about individual people as much as it is about reflecting on how we as a society have embraced disability and difference as part of Irish culture.

The year 2016 kicked off with the imminent General Election and the Disable Inequality Campaign. Activists across the country had the opportunity to meet with (interrogate) their local representatives and urge them to take the needs of people with disabilities into consideration. The ‘Disable Inequality’ Campaign itself was popular and created awareness of issues facing people in Ireland such as poverty (Newstalk reported on 27 September that 70% of people with disabilities struggle to make ends meet), lack of employment and the biggest thorn in our paw, the failure of the previous Government to ratify the United Nations Convention of the Rights of People with Disabilities (UNCRPD). Although everyone has human rights under the ‘normal’ UN Convention, the UNCRPD includes other things such as the right to choose your place of residence, the right to have a Personal Assistant and the right to be a full and active member of your community.

Indeed, the unnecessary institutionalisation of people with disabilities in Ireland continues to be problematic. The Health, Information and Quality Authority (HIQA) found that many residential services were not fit for purpose this year. On 11 November The Irish Times reported that a person staying in the psychiatric unit in Portlaoise was waiting twelve days for a shower. Children were staying in adult psychiatric wards, and one person commented ‘At least I’d get exercise in prison.’

According to independent.ie on 29 October, money was taken from HSE patients’ accounts without full clearance. The ‘mishandling’ of €136.3m of patients’ money and assets including bank accounts, pension books, property documents, investments and jewellery was attributed to staffing issues, which led to inconsistency when recording financial transactions. Well, dress it up however you please: this is theft of the assets of vulnerable people left in the care of greedy vultures.

2016 also saw the Paralympics in Rio, and our athletes brought home eleven medals in total (four gold, four silver & three bronze). Unfortunately Ailish Dunne (one of the Leaders with Offaly CIL) couldn’t compete owing to risks posed by the Zika virus. As with every Paralympics, it was great to see disability being portrayed as a positive thing, although there is still the misperception out there that if you have a disability, you are either an object of pity or ‘Superhuman’ (which so happens to be the name of a Channel 4 programme which explored this very issue).

The portrayal of disability in the media continues to be unbalanced. Some of it is positive. This year, the Blue Teapot Theatre Company in Galway (as seen on the award-winning documentary Somebody to Love) released the film Sanctuary, originally a play written by Christian O’Reilly which explores sexual identity in two characters with intellectual disabilities. The lead roles are played by Kieran Coppinger (Larry) and Charlene Kelly (Sophie), both who have their impairments in real life, and explores love and sexuality in an Ireland where it is illegal for people with intellectual disabilities to have sex (under the old Lunacy Act, which is now replaced by the Assisted Decision Making Act). This play/film has started a much-needed conversation around sexuality and challenges the perception of people with disabilities as being incapable of sexual desires. Most importantly, it highlights that sex is an important part of life, therefore breaking taboos.

Characters with disabilities in box-office films are often portrayed by non-disabled actors, as in Me Before You. However, there was particular disgust at a decision taken by fashion magazine Vogue in August 2016 to use ‘able-bodied’ models, photoshopped to look as though they had disabilities. Two Paralympians, Renato Leite and Paulo Vilhena, both of whom are amputees are said to be the inspiration behind the photoshoot and yet, their own photos were not used to promote the Paralympics. This sends out a negative message that disabled people themselves are neither desirable nor sexy.

Public transport continues to be an issue of contention for people with disabilities in 2016. Owing to staffing issues, wheelchair users across the country are required to give twenty-four hours’ notice to their local stations if they intend to travel by train. On July 2, 2016, the Wicklow People reported that Garrett Jameson from Rathnew was denied access to a local Bus Eireann vehicle, an inaccessible bus stop cited as the reason.  On September 8, the Irish Independent reported that Ann-Marie Champ, a wheelchair user who travels from Dublin to Newbridge to work every day, was refused a ramp at Newbridge and was told by the driver that she would have to get off in Kildare. After this, Ann-Marie had to wait an hour for a taxi to arrive from Portlaoise. On November 19, blogger Louise Bruton, another wheelchair user who checks venues for accessibility and then blogs on her own blog, Legless in Dublin, found herself trapped on a train at Dublin Heuston when assistance to help her off the train failed to arrive. She commented to the Irish Independent: ‘When it comes to a lack of disabled facilities, I’m sick of hearing that it’s a lack of money. The ones with the power to change anything aren’t taking action.’ These, sadly, are not isolated incidents in 2016 Ireland, just some examples of the ones that people had to courage to report. A time has to come when we say: this is not good enough.

And of course, in 2016 we were forced to bid farewell to a man who many of us in the disability community would count as a close friend, Martin Naughton. Martin, who had lived experience of institutionalisation, was responsible for bringing the Independent Living Movement to Ireland. He used every opportunity possible to spread his important message: that people with disabilities in Ireland deserve choice. They deserve to have access to services that will enable them to live wherever they choose, to pursue educational and employment opportunities and to make their own mistakes. In an interview with RTE in July 2016, Martin simply said, ‘The solution is not institution.’

Thankfully, newly appointed Minister for Disability Finian McGrath so far seems to be committed to Martin’s vision. On 20 June he announced an investment of €20m to enable people with disabilities who are currently living in institutions to move out into the community. This was hope to benefit 165 people living in 14 institutions, according to breakingnews.ie. McGrath said: ‘The Programme for Government wants a commitment to continue to move people with disabilities out of congregated settings and our objective is to reduce this figure by one-third by 2021 and ultimately to eliminate all congregated settings.’ However, the UNCRPD is still not ratified as was promised at the start of the year, so only time will tell whether McGrath can truly honour his promises.

So as you can see, 2016 has been an eventful year for people with disabilities in Ireland, but the real question is: are we really making any progress? Well, I can’t tell to be honest, but we are certainly becoming more vocal, and that can only be a good thing. It’s up to us as activists to vow to never stay silent, to always challenge injustice, to strive to live as equal members of our communities and society.

And that is what International Day of People with Disabilities is really about. The perusal of equality and fairness for all.