A Future Within Us

I lay on the hard, unmade bed that I hadn’t really been able to sleep in the night before, and closed my eyes, trying to drown out the medley of Dublin city traffic below me: the deep hum of the Dublin buses, the screeching of random sirens, the faint echo of heavy footfall. Noises that were once so familiar to me ten years ago, as I lay on my overly-narrow single bed in Botany Bay in Trinity College. It should’ve felt like home, and yet, never have I felt so out of place.

I shouldn’t have been lying in bed at half three in the afternoon on such a momentous day as the 23rd September, 2017, a day that I worked so hard towards for the guts of a year. I had left my colleagues behind in the  Mansion House to celebrate the lives of those who had established the Independent Living Movement. An event that I had put everything I had into, turning down paying jobs and little tidbits of work during the summer in the process. I wanted to give all my energy to this event.

Two hours beforehand, I’d tackled one of the things on my bucket list: I performed a piece of drama that I’d co-written in front of two hundred people. As I climbed the stage, I thought I could feel a brick beneath my posterior, I was so nervous. I felt overwhelmed with emotion as I played ‘Rachel’ out on stage, a disabled mother struggling to escape the negative labels placed upon her by an indifferent society. The only way I can describe the experience is ’emotional nakedness’. The tears – and the anger – were evidently mine, not Rachel’s. I couldn’t have dreamed of the positive feedback, and yet afterwards, I wasn’t elated – I was physically sick.

Afterwards, I told myself that it was stress. I panicked because I was filled with fear that I’d pushed it a little too far this time, that once again I had seriously overestimated my physical stamina and taken on too much. But it wasn’t that at all. And it’s only this morning when I feel semi-normal again that I realise when I’ve felt that particular sensation before – the feeling of darkness, heaviness in the pit of my stomach – and it was when my mother died.

Or more specifically, the moment of realisation that she wouldn’t be around for me any more and, as a fully-fledged adult (I was twenty-five when she died) I would now have to shoulder a lot more responsibility for my own life.

It’s easier to be a sheep than a shepherd, easier to follow than to lead. Many of us have followed for years. When Martin Naughton died last year, it felt like the bedrock of the disability activism world was slowly starting to wear away. You could always count on the seven activists that ‘By Us With Us’ honoured on Saturday to lead the way. to spearhead the protests, the fight. Who can we look up to now?

And then it occurred to me that although an intimate knowledge of past successes in disability activism are crucial, we need to trust ourselves and have real belief in our own ability to pave the way to the future. By the way, this nugget of wisdom is coming from someone who has absolutely zero self-confidence and who is still learning to assert her right to use her own voice, the result of years of internalised oppression and being underestimated by those around her.

It’s taken me three days to recover from the emotional rollercoaster that was Saturday (even though I missed most of it) and to get my head around the fact that although the pressure is off in many ways, there is still lots of work waiting in the future. And we – not anyone else – will have to be the ones to put ourselves forward. One of the things that I did manage to gather on Saturday is that there is a general consensus that society is now going backwards, and that the ratification of the United Nations Convention on the Rights of People With Disabilities will not guarantee us our liberties.

That  will depend on us. On every single one of us.

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Legacies

Today, as my husband slinked into the sitting room to eat his dinner in peace, something unusual happened. Within thirty seconds he’d come back out into the kitchen and said in a casual tone certainly unfitting to the matter at hand, ‘There’s a bird flying around the sitting room.’

I closed my eyes as I imagined our black leather couch now covered in those trademark yellow and white stains. ‘You’re not bloody serious?’

‘Afraid so. We shouldn’t have left the front door open.’

Now, if you asked me if I was afraid of birds, I’d normally say no. But you’d need to contextualise. For example, I have no problem watching autumn migrations or gatherings of birds in the garden. Hell, because my daughter is a nature fanatic, I often have to follow them around the park, driving my wheelchair as slowly as possible so that it doesn’t ‘click’ and frighten them away. But the thought of one trapped in our sitting room, flying frantically, trying to escape, filled me with trepidation.

Walking softly towards the sitting room I peered in to see a little robin, with a fiercely red breast, casually exploring our sitting room. My husband and I looked at each other and smiled slightly, and I recognised something in him I wasn’t expecting, a softness. Normally, we would both be sort of like get that bird out of our sitting room before he shites everywhere, but this was different.  It felt like a presence, like an unexpected but welcome visitor. One of our mothers, perhaps, or Maisie, my mum’s friend who, before she closed her eyes for the last time just two months ago, gave me a green card with a little redbreast robin on it. The card simply read Thinking of You.

‘We have to guide him out, before he has a heart attack,’ my husband finally conceded, before gently herding him towards the front door and closing it.

For the superstitious among you, I’m sure you know that a robin is meant to represent a loved one since passed, and its presence symbolises that he/she is thinking of you, that he or she is near. For me, however, robins represent childhood innocence, dependability. Growing up, we had a conservatory at home and one morning, a little robin hopped in through the open doors while we all watched silently. He explored a little, he sang and he left. Soon, that same robin (or so we liked to think at least) came back every morning, let himself into the conservatory and made himself at home. It became routine, a ritual, and when I saw that robin this evening I was instantly reminded of it.

That association with robins is a legacy left to me by my parents. It’s funny how, even though that era is now gone, I remember not so much the robin, but how I felt when we all saw it for the first time, over twenty years ago. The wonder. The quiet respect.

I’ve been thinking about legacies lately, not least because on Saturday, over two hundred activists will come together in Mansion House to remember the influence that disability activists, both past and present, have had over our lives. That space will allow us to reflect on the achievements of the past, and to be thankful for what has been achieved in the name of people with disabilities thus far. But it’s also an acknowledgement that once Saturday’s event is over, we need to continue looking forward, keep striving towards true equality, ensure that our voices are always heard.

Like the robin from my childhood, some of us thought that these people were invincible, that no matter what, they would always be there. My memories of those who I will be remembering on Saturday are sometimes the only fuel that keeps me involved in activism. Sooner or later, we are going to have to look at the future, and it can be scary when someone we looked up to, be that a parent or sibling in the literal or figurative sense, is no longer here to guide us.

When it seems that all the greatness of the world is slowly disappearing, will we be able to find the courage to look within ourselves. to see what we can offer? And if we can’t trust ourselves to do this, who can we trust to educate our legacies to our children? That’s why we need to tell them about the past, the robin. We all need to know where we came from.

And sometimes we need a reminder, so that we may create meaningful legacies for them. We need to remember the past, not to live in it, but rather to use it as a blueprint to make our own mark in history.

 

 

 

 

 

Take Care of Yourself

It’s something that we all say to each other, almost like a cliché, at the end of phone calls or when bidding each other adieu when meeting face-to-face: ‘Take care of yourself’. We say it because we care about the other person, and yet we don’t always follow our own advice.

Correction: that should read, I don’t follow my own advice.

As long as I can remember, I’ve always been crap at looking after myself. And before you go off ringing social services, this never has impacted on my ability to look after my daughter; she’s never gone without. But somewhere along the way I seem to acquired the message that my needs aren’t as important as the needs of others. Perhaps it’s a result of internalised oppression (something I’ve been researching lately for the novel I’m writing), the result of growing up in a world where disability is some sort of ‘other’, a deviation from the norm.

Perhaps I need to re-evaluate what I can realistically achieve. I say that I’m writing a novel, but in truth, I don’t know if I’ll ever get it finished. A friend read what I’ve done so far and gave some great constructive feedback, but warned me what I already knew: that it may be difficult to publish and even more difficult to sell. I’m starting to wonder whether I should’ve stuck to short stories, started small. I’m trying to decide whether I’m in over my head. (He didn’t criticise the story though, which gives me hope).

This feeling of tiredness coincides with the fact that I’m waiting for four new (solid this time) tyres for my wheelchair, as one is quite badly flat. And to be honest, reader, I feel very hard done by this. I like being able to whizz around town from this shop to that, and still have the energy to write rubbish blogs and do other work, and being housebound does not become me. As I said in an earlier blog, the wheelchair has been an invaluable addition to my life. It offers me independence with my daughter and enables me to be both a mother and a writer.

I’m writing this  blog to inform my loyal followers that I probably won’t be around for a few weeks as I’m off, with the help of some great friends, to try and reactivate the entire Independent Living Movement (although if I get the wheelchair back, I’ll have energy to spare!) And to say thank you all for being so amazingly supportive of my ‘writing career’ and for your lovely comments.

That’s it for now. See you soon! Until then, take care of yourselves. I’m off to veg in front of the telly before another hectic week of trying to make a difference, however small, in the world.

 

Man, I feel like a writer…

I am writing this blog today in the hope that after I do so, the inspiration that I need to fix the middle of my novel will magically appear and afterwards my office will feel like it’s full of unicorns and rainbows.

It’s been two years since I left my job and decided that I wanted to be a writer. I wasn’t under any illusion that doing this would ever make me rich. It wasn’t the money I was seeking, or fame or recognition or anything like that. It was the sense of feeling useful, productive, being able to see on a blank page exactly what I’d produced that day. Having tangible goals. Doing the unthinkable and throwing myself out there, feeding myself to the wolves.

One thing that I did wrongly anticipate was having a real sense of pride in what I do. I’m ashamed to say that although I try to convince myself otherwise on a daily basis, part of me feel like a giant fraud. Especially when people ask how the novel is getting on (‘How long have you been writing it now? Two years?! You must be nearly finished.’) Nope, nowhere even close. I now realise that I probably should’ve started with something slightly more manageable, like a collection of short stories, but I can’t backpedal now. I’ll finish this book if it kills me! (and by the looks of it, it probably will).

Another frustrating aspect of my life right now is that I can’t decide whether I should focus on activism or writing more. Obviously, in writing the novel, I’m tackling both at the same time which, if I wrote it properly, could start a whole new conversation about how we perceive disability as an issue in Ireland (okay, perhaps I am being a little overambitious, but better to aim too high than too low, right?). But then I can feel myself being pulled towards being a full-time activist, always trying to make a difference, and I think to myself: God almighty, what is it I want?!

I’ve also found myself looking at the job section in the paper/on websites a bit more lately and every time I do so, I can physically feel myself trying to repress my urge to write. You said that if you weren’t getting a steady income by the middle of this year, you’d quit. This makes me turn cold. Inner voice, stop talking out of your behind! I can’t quit. People will laugh at me, think badly of me, I’ll have to start all over again and anyway, if I’m ready to quit, what is this magical force that keeps bringing me back to the keyboard?

Maybe it’s organising an event to honour Irish Disability Activists that has me frazzled, but I have to admit that being involved in this project has prompted me to think about the legacy that activists such as Martin and Donal have left to us. I look at them and others, and at what they achieved and failed to achieve for us, and remember their unwavering passion and I think, how did they never lose their passion? How did they and so many others keep going even when they were told they were wrong? They used their voices with confidence; I hide behind a computer screen.

With my words, where I feel safe.

I know that I’m probably going to return to the workforce, sooner rather than later, but I’d rather do it with something to show for myself. Something tangible, preferably a novel or some kind of written portfolio. Something to leave behind. A legacy.

And I suppose, isn’t that what activists and writers have in common: the irrepressible need to leave their mark on the world? Seems they’re not so different, after all.