Mother’s Day Hunger

Tomorrow is Mother’s Day. Normally I’d anticipate it coming but this year it just hit me out of the blue. ‘Happy Mother’s Day!’ shrieked Alison on the way out of school on Friday afternoon, waving yet another piece of brilliant artwork. And it is brilliant; you can see the improvements in the detail of the people she draws. They’re no longer stick people, they have trousers and dresses, eyelashes and even bracelets. She’s growing up every day, because of me, or in spite of me – I’m never sure which.

We spent the whole day in town together, and after the two hours in the park decided to pick out something for her two nanas’ graves. We eventually found something vaguely acceptable, but as I surveyed them, something sank in my stomach. It’s not only the feeling of loss that comes with every Mother’s Day when your mum passes away. This was a very real but unreasonable sensation. I’ll try to explain.

Every Saturday if the weather’s good, Ali and I will go for lunch, a kind of mother/daughter bonding activity. It’s become a habit, a ritual, one I used to look forward to (I love cooking  but hate the clean-up after). Now, however, the novelty has worn off and I’ve started making dinner at home more. My cooking is nice, but also there’s nowhere in the world that will ever serve food the way mum used to make it. Sausage stew, roast pork, ‘twice-baked’ spuds filled with ham, onion and cheese, cheesy veg, lasagne (I’m salivating here and it has nothing to do with my Cerebral Palsy). I know it sounds ridiculous but even if I followed recipes the thought of never eating her food as she cooked it hurts. I’m hungry for the nice food.

And as with every Mother’s Day, I’m hungry for her.

I’m hungry for the ridiculous fights we had on countless Mother’s Days when she used to insist  on cooking dinner (probably for the same reasons that I can’t seem to find a nice restaurant these days – she liked her own food) after which she would moan incessantly about how nobody helped her even though she liked doing things her own way and she had previously insisted on cooking alone.

I’m hungry for the ridiculous squeals of appreciation at presents we got in the Pound Shop that she’d probably given us money to buy (wow, just what I need! A stuffed penguin!) and the feeling that no matter what you got her it would never compensate for the job she did as a mother. And her smiles as she opened the cards and cooed over our artwork.

I’m hungry for who she could’ve been, whether that might’ve been a famous interior designer, a ‘hip’ nana or a grumpy curmudgeon and I often wonder what she would have made of JP and I having Ali, and whether she would’ve insisted that she wasn’t an on-call babysitter with one breath and threatened to adopt my daughter with another. I wonder if she would approve of my choice to leave a paid job and enter the murky world of freelancing, or if she’d be embarrassed by my seeming laziness. She certainly wouldn’t approve of the wheelchair, but I also know that she kind of, sort of, trusted my ability to make sensible decisions.

I’ll never know what she did and didn’t approve of. I only have one regret, and that is how hard I was on her, how much I expected of her. Being a mother is hard work and scary sometimes, and sometimes she had bad days like us all, which she tried to hide from us. When I was small, I thought my mum was invincible, and even when I was told at the age of twenty-five that she had passed away, I said ‘no, sure try waking her again, she’s just a very heavy sleeper(!!!) (She slept through a bomb which demolished some of her house in Cookstown at the age of fourteen).  I, like all of us, took her death hard, and when my own daughter was born three years later, I panicked. How was I going to do this without the support of the woman who had such a major role in who I am today? And yet, I did, sort of. Call me crazy but during that time I had to believe she was close by otherwise I would have crumbled altogether.

Now, my grief is more reserved, but it won’t stop the tears on a day like tomorrow. Yet tomorrow too will come and go, feelings of happiness and sadness intertwined with begrudging acceptance. I think one of Mum’s favourite country and western singers, Kathy Mattea, puts it more eloquently than I ever could:

‘We’ll never know what could have been, but looking back we see
What could have been, and never was, was never meant to be.’

Now there you go mum, your own Mother’s Day blog! No ‘I wish heaven had a phone’ memes for you! xxx

 

 

 

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Wheel Independence

 

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My poor, sad, neglected wheelchair (sad face)

 

 

I have really missed blogging here for the last two weeks (I’m back, yay), but to be honest, I just needed a break. I felt wiped, depleted and I know from hard  experience that when I feel like this it’s better to take a breather rather than having a meltdown and sobbing in my jammies at the side of the canal at 4.30am (ahem, apparently). I have been busy though with activism, and I got my submission in to Date With An Agent (I hope – I never enclosed an SAE to acknowledge my entry but I know my  future award winning novel will totally be selected), so that could account for why I’m that little bit more tired.

Or maybe it’s because for the last month and a half, I’ve been without my electric wheelchair, and the extra physical effort of walking everywhere is taking its toll. And thank God it is finally getting fixed tomorrow, because I am wiped.

My dear mother, who spent the first five years of my life doing physio with me every morning, was dead set against me using a wheelchair. We lived in a two-storey house when most of my disabled friends lived in bungalows. She wasn’t too keen on me having a wheelchair in college, although she understood the reasoning behind it. Growing up in a mainstream world led me to believe that one’s value was largely based on their physical ability to do things and to get around.

When I had Alison, my friend advised me that I wouldn’t want to miss out on doing things with my daughter, and so I got myself an electric wheelchair. Being ambulant I don’t think I’d have any chance getting one off the HSE. And for the first time since becoming a mother, I wasn’t housebound. I could take Alison for walks whenever I wanted, long walks and still have the energy to come home and do some housewifey things, and write my masterpiece. This is why the phrase ‘confined to a wheelchair’ annoys me so much. A wheelchair doesn’t confine, it liberates! Without it, I feel confined, trapped within the limitations of my body.

I firmly believe that when we are given access to tools like wheelchairs, technological aids and Personal Assistance, we are enabled to become the best us we can be. There is great strength in acknowledging that your physical impairments are not the problem, that society needs to address the needs of people with disabilities and be more inclusive. Above all, I believe that people with disabilities need to drive this change themselves.

It came to my attention over the weekend that student Kathleen McNamee, senior editor of the University Times, ‘cripped up’ or explored Trinity College campus in a wheelchair. What’s wrong with this, you might ask. Isn’t it great that people without impairments are trying to see the world through the eyes of a wheelchair user? Well firstly, Kathleen is not a wheelchair user; at the end of her article she wrote: ‘While I will be happy to hand my chair back tomorrow morning, I am also aware that not everyone is afforded this opportunity’. To me this implies that she sees the ‘problem’ as the wheelchair,  not the inaccessible environment. Also, why did she have to ‘crip up’? Why didn’t she look for the experiences of full-time wheelchair users who navigate the campus on a daily basis?

Secondly, I felt that the article was a little unfair on Trinity. When I carried out an access audit in 2004, we identified all of the problem areas and efforts have been made to fix things: the pathway through Front Square, there’s now a lift up to the Pav (the on-campus watering hole) and ramps to the buildings in Front Square. Things are far from perfect, but they’re improving.

Irish Rail, however, seems to be getting worse. A friend of mine told me recently that on principle she refuses to give any train station 24 hours’ notice of her intention to travel because she sees herself as equal. Today I had to travel by train (I had no wheelchair, just my rollator) and didn’t give notice, so I had no reason to be disgusted when assistance didn’t appear in Tullamore (even though I rang an hour beforehand), leaving me no choice but to fling my rollator and myself off the train. Had I been in my wheelchair I’d probably be writing this from Galway!

So to summarise, I’m looking forward to my wheelchair being repaired in the morning and to getting my independence and energy levels back. My normal life back. I know I should make more of an effort to get fit, and some might think I shouldn’t be so lazy. Feck that. My daughter needs a mummy who has the energy to do things and go places with her, and I need the energy to write, and that’s exactly what my wheelchair offers. It doesn’t matter how you get there, as long as you do!

Apologies for absence!

Hello to my adoring fans! I hope you are all well.

Hoping to get my blogging mojo back soon (probably will as soon as I’ve posted this, lol) but may not be around for a week or two owing to other projects like my first commission of the year (Watch this space), trying to submit something for A Date With An Agent (for which I fully expect to be selected of course) and another blog in progress for an activist group called By Us With Us. We’re a new group made up of  people looking back on the history of the Independent Living Movement and joining together to face the future. You can visit our blog here.

But don’t worry: as Arnie says, I’ll be back…….

How Many More Graces?

I go through phases, extremes of mood and thoughts. Sometimes I’m elated. I love writing. I know I’ve made the right choices in life. Other times I worry that I’m making myself increasingly unemployable as the days go past.

I haven’t really left the Centre for Independent Living behind, of course. I still volunteer a lot of my time to promoting the philosophy of independent living and campaigning for equal rights for people with disabilities. In fact, I’m now part of an activist group called By Us With Us. we’re still relatively new, but we recently set up a blog which is well worth a look.

Independent Living is not my job any more, my husband insists. You’re a writer now. You should be dedicating every free minute you have to writing and trying to get published.

And oh, how I would love to! How I wish life could be this simple, that I could have the luxury of locking the office door every day, focusing on nothing but putting words down on paper. My  mother used to tell me that I can’t fix all of the wrongs in the world. She was right, of course, but there are so, so many wrongs that I feel that I must try and do something;

As most of you know, I’m writing a novel at the moment, a story that initially came to me in 2007 while I was unemployed for six months. The story explores the life of a disabled woman who was tortured by a nun in a residential institution and how she copes with the aftermath of that abuse. Lately, I’ve been finding it hard to stay motivated. This is off the wall, I thought to myself as I rewrote the first chapter the other night (for the sixth time). No-one reading  this is going to believe that someone could be treated with such cruelty.

I’m not a trusting person anyway, and I’m sure I’m not alone in this distrust, particularly in the government at the moment (or, as it is starting to transpire, any government before or after this). Yesterday, the story of the abuse suffered by ‘Grace’ dominated headlines, a girl with an intellectual disability (now forty years old) who was abused while in foster care. It’s still a little unclear the extent or the nature of the abuse; some of it is of a sexual nature.

Grace has an intellectual disability and in the eyes of the Irish state at least, cannot be trusted to have her own narrative voice. And in Ireland, this is not limited to those with intellectual disabilities. The opinions and lived experiences of disabled people in Ireland don’t seem to matter to our policy makers.

I doubt that Grace is an isolated case. So why is there such little uproar about the status quo? There is mounting evidence to illustrate that disabled people should not be living in institutions, that the state cannot be trusted to provide a decent standard of care. Who can?

In December 2014, the nation was shocked by the Aras Attracta scandal, which saw people with intellectual disabilities being physically and psychologically tortured by those who were meant to care for them. People were disgusted by the RTE documentary; at one point my husband, whose stomach was turning, asked me to turn it off. I refused.

‘How can you sit there and watch that?’ he asked, bewildered by my seeming nonchalance.

‘Because,’ I replied, ‘Ireland has buried its head in the sand for too long. We have a government, and this and successive governments not only allow this abuse to happen, but by implementing cutbacks create situations such as these. We need to see this and someone needs to take responsibility.’

The Aras Attracta staff were later held accountable and given paltry sentences of community service. But what happens to those who continue to abuse people with disabilities behind closed doors, and are never questioned? I’m not talking solely about people in congregated living settings – I’m talking about people who suffer abuse at the hands of their families too.

When I started doing some research for my novel, what struck me was the lack of information available about how disabled people were treated in Ireland over the last fifty years. Apart from a few research papers, the Irish Wheelchair Association’s collection of stories, Extraordinary Lives, and this documentary on the programme ‘Horizon’ called ‘The Weakest Link’ on RTE in 1966, there isn’t a lot of documented stories about what life was like for a disabled person, particularly in a residential setting. So essentially I’m writing a story about something I have little information.

But if I can achieve this, then I will be happy. Because it’s time for disabled people to tell their stories, and to discover and reclaim their histories.

If we don’t, then our stories will be like Grace’s – spoken through the mouths of people on the outside.  Our stories should – and deserve to be – woven into the mainstream fabric of Irish society.