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.

Round my Hometown

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I was born and reared in the Midlands town of Tullamore for nineteen years.

Between the ages of nineteen and twenty-five, I decided to spread my wings and I moved to Dublin while studying in Trinity. I loved Dublin and living independently, and I think my favourite part was being able to get around so easily, whether it was in my electric wheelchair or using public transport (buses and Luases, I mean. The DART is notoriously dangerous and unreliable for people who use wheelchairs or have mobility difficulties). The Luas in particular became my lifeline when I was living out in Rathmines, and I used to use it coming into work in Trinity during the summer. When somewhere is easy to access and get around, it really adds to your quality of life. At one point, I was both working and studying. It was great.

Although I loved Dublin, I knew that I couldn’t afford to stay there after I graduated. So I moved to Mullingar, then Portlaoise before finally choosing to stay in Tullamore. It was great to be in a place that I felt I belonged in and that I thought I could get around easily and independently. And to be fair, I could – until I started using a wheelchair. Suddenly, certain areas of Tullamore didn’t seem so welcoming to me any more.

I’ve always believed that disability is defined by the obstacles that are created by society rather than one’s individual impairment, and I believe that reasonable accommodations such as ramps, clear signage, wide step-free doors and loud signals at pedestrian crossings can go a long way in ensuring our town is accessible to all who use it. In 2014, the Offaly Leader Forum (now the Laois/Offaly Leader Forum), which is a group of people with varied disabilities – physical and sensory – organised and conducted a full-scale accessibility review of Tullamore, the first of its kind in ten years. As people with disabilities, we were the experts in identifying barriers to access in town. The group took the undertaking seriously, taking photographs and compiling reports, and subsequently these reports were compiled into a hundred-and-one paged document, an impressive achievement by any standards. We then presented it to town councillors in Tullamore Town Library (which is accessible, according to our audit) and urged them to see Tullamore through our eyes.

Since making our presentation, the Laois/Offaly Leader Forum has established good working relationships with our town councillors, who we have met with several times to voice our concerns. Through doing this, we are now working together, and we have urged the council to consult us whenever they make changes in the town. And recently we discovered that our annoying persistence is starting to pay off.

Little changes and repairs are taking place all over town, but for me the most significant of these is  the ramps that have now been installed on the top of Main Street and at the Srah Roundabout. I live in Glendaniel, which is ten minutes’ walk from the Town Park, Lidl and Alison’s primary school, Scoil Mhuire, and the installation of these ramps means that I no longer have to proceed beside the footpath on the road onto traffic coming off the roundabout. It’s safer for me, my child and for the poor drivers who I’m sure don’t want to dent their cars on my wheelchair…! And the best part of the repairs is the knowledge that as a group, the Laois/Offaly Leader Forum, were taken seriously and listened to. But then again, we were dealing with people we knew for years, and people who have always supported the Laois/Offaly Leader Forum, for example Eddie Fitzpatrick and Declan Harvey (among many others, of course). Isn’t that the most important thing: being able to truly be an equal part of your community?

Now, more than ever, I’m looking forward to raising our child in a town that means so much to me. The town where I went to school, and developed a passion for writing. The town where I got my first summer job in the Tullamore Tribune, as well as my first ‘real job’ in the Offaly Centre for Independent Living Ltd. The town where my neighbour, who used to live eight doors down us, remains my best friend.

I have to admit, Tullamore always was a pretty great place to live, but with these little changes to our town, it can become a great place for everybody to live independently.

The Trump Card

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Like all of us, I woke up this morning to the horrible news that Donald Trump has been elected President of the United States. (Slow clap for those who elected him). Everybody I’ve spoken to so far is absolutely terrified of the wider-reaching implications this will have. Acclaimed author and recently turned television presenter Louise O’Neill wrote a long status on Facebook this morning expressing her fear for all people, including women, children and people with disabilities.

Once I saw the words ‘people with disabilities,’ I knew I had to write something in response.

Being an average Josephine on the other side of the pond, I can’t see what (some of) the people of America would see in Trump. He’s rude, obnoxious, racist, sexist, and every other ‘ist’ you can think of. He’s a modern day Hitler, with a warped vision and he doesn’t care who he has to hurt, sideline or destroy in order to reach this vision. But I have to admit, I wasn’t that surprised he was elected. The vast majority of people want change, but many are afraid of what would happen if it actually came about.

Just look at our own situation in Ireland for a second. We had a general election back in February, and everyone I spoke to about it was adamant that Enda Kenny would not get in again. His government made one of the biggest threats to Personal Assistant Services in the history of the State. Cuts made to welfare allowances, the creation of the giant money pit known as Irish Water… I could go on incessantly. And yet, our only alternative was to vote Independent (which I did) or to vote for Fianna Fail, who led the country into recession in the first place. (Whoever voted for Gerry Adams needs their heads examined).

So here we are again, and what are we going to do about it? Have a good old moan. Rant about it on Facebook. Write a blog.

After all, we can’t change the world, can we? We’re only small, insignificant people. So why bother, right?

This is exactly how I felt in work a year and a half ago. Working in the area of Independent Living for seven years and hearing about how hard people had to work to reach their goals. How many obstacles stand in their way: negative attitudes, inaccessible environments, fear of losing their benefits and their medical cards. I started to wonder how we could change all this, and my head hurt. And the more research I did into the discrimination against people with disabilities, the more disheartened I became.

Whether we are interested in history or not, our personal history, and our wider social history, are the cornerstones of who we are. And for me, as a disabled person (a person disabled by society) it was only when I became aware of this history that I developed a clearer understanding of what I was up against. Hitler’s T4 Projekt, which involved the ‘mercy killing’ of an estimated 700,000 people with disabilities, was a horrific act, but yet people with disabilities continue to fight for their basic rights, to live in their own homes, to do whatever they want whenever they want, to be recognised as equal. Elsewhere across the world, disabled women across the world continue to be forced into sterilisation, for fear that they will inflict more disabled children upon society. This is perceived to be a bad thing, because society dictates that it’s a bad thing.

Now that I know about all of this stuff, I can’t unlearn it. Born during the wrong era, in the wrong country, this could’ve been my fate. Who knows – the way the world is going it still could be.

As many of you know, I’ve been trying to  write a novel for over a year now, and the theme of the novel is exactly what I discussed above. It’s about a woman with Cerebral Palsy who’s been moulded by society’s low expectations of her, about her struggle to express her individuality in a world that wants to define her, and how, like all of us, the past has left a permanent impression on how she sees the world and her thought processes. Can a person ever be separated from their past?

Can our society?

The majority of us want a fair and equal society, but unfortunately this may have to happen in spite of, not because of, those in power. From the moment we are born, we are part of a machine. Some of us are seen as the core components, others merely the decorative extras. Some still are perceived to be the silicone packets that come in handbags – no-one seems to know what they’re for. We still live in a world where physical ability is prized over everything else, where impairment is seen as a weakness, where medical advances and robotic legs seem to be favoured over inclusiveness and equality for people with disabilities.

So Donald Trump is now the president of the US, and I think that instead of tearing our hair out we need to remain strong and calm, be we people of colour, women, men, children, people with disabilities. We need to look to the future and strive to achieve the world we want to leave to our children. We need to stand together, exercise love and understanding, and never settle for anything less than acceptance and equality. Change will only happen when we instigate it

After all, history should be used as a lesson. And if we don’t learn from it, then we shouldn’t be surprised when it repeats itself.

Halloween Tricks and Treats

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I am absolutely exhausted. I keep forgetting that I’m not Martha Stewart and I’ve spent a good part of today baking and making little treats with Ali. JP says that we were making memories, but that’s not what I would’ve called our kitchen circa 3pm this afternoon. Think confined space, sticky gloop and hand grenade. Funny how none of that is captured in those expensive baking magazines, eh? (In hindsight, marshmallow top-hats would’ve sufficed. Making muffins was pure madness, especially for someone who is almost allergic to baking).

Ali was harping on at me for ages to have a Halloween party, but to be honest, I don’t think Halloween is that big a deal. It certainly wasn’t in our day, when the majority of costumes were plastic masks and bin liners (I haven’t seen a kid in a bin liner in yonks). I certainly don’t believe in holding unnecessary gatherings which require cleaning up of any description unless it’s not in my house. We didn’t have Halloween parties, although some of the other children did. They were weirdly extravagant affairs, with material costumes and Halloween decorations.

I remember how I used to almost resent mum for this lack of effort, for this apathy towards what was such an important holiday. She didn’t even let us go trick-or-treating on our own: instead, we were bundled into the back of the car and escorted to her friends’ houses, where we would stay for half an hour at a time. I wasn’t impressed that she would let my older brother Steve go by himself. I remember the really early days, when Steve was still trick-or-treating, emptying our bags, trawling for cash. We’d usually be able to stump up about four pounds and Steve would walk to Egans the next day and buy four hundred penny sweets which would be long eaten before we’d touched all the monkey nuts we accumulated.

I  don’t think anyone in our house liked Bairin Breac, so every year mum would bake two apple tarts (which we sometimes ate after Trick-or-Treating) and hide punt coins wrapped in greaseproof paper. No ring shite for her; she made mauling her apple tart worthwhile. She also bought sweets for the trick-or-treaters, which was rare at the time, and I know for a fact that certain trick-or-treaters changed costumes and visited our house more than once! (Won’t mention names though – the past is the past and all that). And that was Halloween.  No frills, no party games or bobbing for apples. Pretty boring really.

And then one Halloween night, in 2001 to be exact, Dad got a phone call to say that his mother had passed. He looked so forlorn, so lost, and so tired, having only come in from work fifteen minutes before.  Fifteen years have passed, but in many ways it doesn’t feel like it. It’s something that all we cousins remember even now. After all, gatherings at granny’s was often the only place we were all together, and now that was gone. Her wake and her funeral happened during midterm, and us girls went back to school, a little bit emptier.

As an adult, the feeling of loss is what I now associate with Halloween, but as a parent, I want Alison to remember Halloween for the right reasons. I want her to remember fun and happiness, and not sadness. I want her to remember the lengths we went to to decorate, to make treats, to enjoy each other. But sometimes I have to remember to calm the f**k down.

As scary as it is, there’s certain things I just can’t control. It’s taken me a while to learn it, and one day, she will learn it too. It doesn’t mean that I’ll stop trying to make her happy. Although next year, I might just decorate shop-bought madeiras instead. And in doing so, I’ll be teaching her something important: there’s no point in trying to be something you’re not.

The Beauty of Writing a Novel

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Anyone who knows me will know that for the last sixteen months, I’ve been working on my first novel. (Well, I say with optimism that it’s my first, but after this experience I may well decide never, ever to attempt this again).

I’ve dedicated myself fully to this project. I even bought myself a bigger desk, twice the size of the dinky thing I’ve worked at for the last year, in the hope that the words will flow as freely as they tend to pop into my head when I’m on the loo or cooking dinner. And, I have to admit, it works for the most part: I have my own ‘office’, I go to ‘work’ everyday, I set myself proper writing deadlines.

The truth is, when I started to write this story last July, it wasn’t supposed to turn into the massive 130,000 word mess it is now. It was just an idea that I had in my early twenties, one of many throwaway ideas that came back to me. I’d tried writing this particular story before, but got bored after 4,000 words, and assumed that the idea was unworkable. Little did I realise that in the space of nine years, this idea would become all-consuming and that I would never be happy, not really, until it’s out of my system. And hopefully, the first crappy draft will be written by Christmas, though I may be over-optimistic at this stage. (by the way, first drafts are supposed to be crappy, so I’ve been told).

Writing a novel is both tremendous fun and an enormous pain in the backside. I’m in control of my main character. I can make her do anything I like (although a lot of the time she goes off and does her own thing). Making everything tie together seems to be my biggest challenge at the moment, along with organically tying in important statistics and facts into the fabric  of my story.

And it’s tiring. At the moment, ‘work’ seems to consist of opening Microsoft Word and staring at the words for three hours. Some weeks are more productive than others, and it’s during the bad weeks that I try to tell myself that if this was a ‘real’ job, I would have to grit my teeth, sit at my desk and work regardless. I’m creatively wrecked at the moment, but I’m afraid that if I don’t sit at my desk every day and plug away at it, nothing will get done.

That, I think, is the crux of it. Fear. The fear of being made to look like an idiot if I can’t manage to get this book finished and into the hands of readers. Fear that if my book is never published that I might have to abandon the prospect of having a writing career and start all over again. fear that nobody will like my book, or understand where the main character is coming from. I have successfully managed to push fear just to the edges of my brain so that I can write freely. I try not to think of you guys, my audience, too much so that I can stay true to my character and the situations she finds herself in.

I’m also afraid of success (getting ahead of myself I know) and afraid that I am offering more  of myself than I’m willing to give. Having Martin Naughton pass away has only cemented my desire to continue, in my own small, insignificant way, to change the world. I don’t want my daughter to grow up in a world where disability is something to be pitied, an ‘other’. Nor do I want her to live in a world where the only disabled people worth talking about is the ones who ‘triumph over adversity’ ‘defeat the  odds’, achieve more than people expect of them. All of our stories are worth telling: the successes, the failures and everything in-between.

I don’t want any regrets on my deathbed, any ‘what-ifs’. All I want is to make a difference and not rest until it’s made. And writing’s the only way I know how to do this.

In this spirit of determination, I will keep going, in the hope that I have something worthwhile to contribute.

A Tribute to Martin Naughton: Activist, Campaigner, Friend

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I woke up with a start this morning, the darkness threatening to suffocate me. My sleepy brain told me that I had woken up in a world that was different than the one I opened my eyes to yesterday, which was the thirteenth of October, 2016.

Then I remembered. I felt my stomach close in on itself as the events of the last twenty-four hours rushed back to my memory: Martin Naughton, prominent disability advocate and all-round good guy, passed away yesterday aged sixty-two, following a short illness. There is nothing worse than hearing the news, via social media (so tacky), that someone who made such a huge impact on your life has died. At first I thought (hoped) it might have been a hoax, a rumour, but as the Independent and RTE published their stories, the reality of our loss hit home.

Everyone in the disability world knows Martin. He’s our representative, our ‘go-to’ guy. If the Independent Living Movement was a mafia, he’d be our Don; he was always trying to think of new and seemingly radical ways of equalising the playing field for people with disabilities. (such as giving us full control over our lives in the form of Direct Payments – I know, outlandish, right?!)

Martin had an impairment called Spinal Muscular Atrophy, and spent his childhood in St. Mary’s Hospital in Baldoyle, where he developed a strong stance against the institutionalisation of people with disabilities.  He became a youth leader and coach there, and became a strong advocate for people with disabilities. When he went travelling in the US, he saw the disability movement in action first-hand and on his return to Ireland, immediately set about bringing Personal Assistance here. This began with ‘Operation Get Out,’ a programme designed to move people who had been institutionalised back out into the community and culminated in the development of Ireland’s first Center for Independent Living in Dublin.  There are now around 25 CILs across Ireland today, thanks to Martin.

Martin dedicated his entire life to trying to achieve equality for people with disabilities, but the first I ever heard of him was in 2005, when I was looking for a summer job in Dublin. My Personal Assistant arranged for me to have a job interview with him in Chief O’Neill’s in Smithfield. She didn’t know much about him, so I’d pictured a stern-looking man in a suit, wielding a pen and ticking boxes as I spoke. As it turned out, I didn’t do a lot of talking during that interview, but I’ll never forget it. Martin’s kind, soft features put me at ease as he spoke passionately about the need for Leaders (people with disabilities) to take full control of their own lives and to have a platform from where they could voice their concern about their Personal Assistant Services. This platform was called a Leader Forum and it was my job to help him put it together. This experience later enabled me to help establish forums in Laois and Offaly. I could see that this was a man with a rare combination of passion, vision, and stubbornness. He would not rest until he realised his goals.

That September, Martin would lead the biannual Strasbourg Freedom Drive for the second time, and although I couldn’t go, it awakened in me an awareness that issues facing people with disabilities in Ireland are commonplace across Europe. During this Freedom Drive, people with disabilities across Europe convened at the European Parliament with key demands, which invariably included the deinstitutionalisation of people with disabilities and the recognition of the Personal Assistant Service as a basic human right. The slogan for the event was ‘Nothing About Us Without Us.’

I started working with Offaly Centre for Independent Living Ltd in 2008, and thanks to Martin, I had a clear idea of what I wanted to achieve. However, I soon discovered that it wasn’t as easy to motivate others to fight for equal rights. During the recession (that we’ve apparently come out of), a time when ‘cutbacks’ instilled more fear in people with disabilities than any other word, Martin was actively protesting against these cutbacks. He and other activists took the drastic measure of camping outside Leinster House, and their perseverance was worth it when the cuts were reversed.  Just last year, in September 2015, he organised another three day protest outside the Dail where he expressed his disappointment to our Taoiseach, Enda Kenny, on hearing that investments were going to be made into residential institutions.

Martin is a celebrity, and we all loved to see him coming to Offaly. In 2010 he agreed to be filmed as part of a promotional DVD Paddy Slattery and myself made for Offaly CIL Ltd, called ‘My Life with Me in It,’ in which he explained how he established the Independent Living Movement and how he helped Michael Nestor establish Offaly CIL. In October 2011, when prominent US advocate Judy Heumann came to visit us in Offaly, Martin came to meet her, noting the many similarities in the struggles for independent living for people in the US and in Ireland. That day, he introduced me to Judy as a hard-working Trinity Graduate who was passionate about forwarding the Independent Living Movement. It was the highlight of my seven years’ service with Offaly CIL. Despite the fact Martin met so many people every day, he had still taken the time to get to know me as a person and believe in me as a person. I’m crying just remembering that moment!

And in spite of his many achievements, Martin always strove to achieve more. The Offaly Leader Forum (now the Laois/Offaly Leader Forum) organised a celebratory event in September 2015 to mark twenty years of Independent Living in Offaly. While other speakers were maudlin about the past, Martin focused instead on the future, warning us that must never become complacent in our pursuit of equality. Before his passing, he was actively campaigning for the introduction of Direct Payments, insisting that we must believe in our ability to take control of our lives and to achieve our potential in everything we do.

Nobody could accuse Martin of not achieving his potential. And now that he has passed from this world, we have to ensure that his legacy lives on, never for a moment doubting that we deserve anything less than to live with dignity, respect and choice in our own communities.

Codladh go sámh, a chara. You will be missed, but never forgotten. Thanks for everything xx