Tag Archives: loss

Our Fallen Comrades

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(In tribute to Selina Bonnie)

“…and those who once paved the way for us

Are dying, one by one…”

This is a quote from my own poem, Fight, Fight, Fight, which I wrote in November 2017. John Doyle had just passed away, and I was upset and extremely pissed off. Bereavement and death is a fact of life; we all deal with it at some point. Many of us spend our lives grieving a grandparent, parent, friend or, unthinkably, a child. Death is a natural part of life; yet it doesn’t feel right to say that I can list, off the top of my head, at least thirty people who have died in the last ten years. Perhaps more than thirty. Disabled people, that is. Peers. Companions. Life-long friends. And no matter how many times we lose a friend, the sting is always acute.

I have been trying for the last ten years to understand the unique bond that holds disabled people together. It may be that organisations such as Independent Living Movement Ireland and the Irish Wheelchair Association created spaces over the years for disabled people to come together. Maybe it’s because only we, with our wealth of lived experience, can truly understand the exclusion and discrimination that we face on a daily basis.  When we share our experiences, we come to understand that it’s not “just us” and, over time, we realise that we are not the “problem”. And when one of us decides to challenge the system, we all do. As difficult as it can be, we understand that our personal must become political, in order to help those coming behind us. Of course this isn’t fair, but knowing that you’re supported by a unique movement, motivated by a genuine thirst for social justice and a desire to make life easier for everyone, makes the life of activism a lot more bearable. People who look out for you and genuinely care about you.

When we were born, our parents were told not to have high expectations. That we would never amount to anything. And that we wouldn’t live long. That speech seemed to have been given to parents of disabled children everywhere; I have heard and read those exact words, verbatim, so many times in my life. Thereafter comes the next part of the story: we proved them wrong. We earned our place in the mainstream. We progressed in life, despite the low expectations. Then we became examples, beacons of hope for the generations coming behind us. And as disabled people, we bonded through our victories and shared disappointments and became stronger. We became family. A modern-day family, with favourite brothers and sisters, and pains-in-our-arses that we begrudgingly admire, sometimes even partners and soulmates.

Very often, disabled people came together for a common cause, but as we began to open up to one another, we realised that our commonalities went much deeper. We shared the trauma of overmedicalised childhoods, and as we became more comfortable with each other, we started to wonder if we could, in fact, have a better quality of life. With our peers behind us, we felt emboldened to take risks, to reject the pity of strangers in search of equal rights. As children, or newly disabled people, no-one told us that we didn’t have to put up with injustice. Through getting to know our peers, we figured that out for ourselves.

That’s why it’s always such a bitter pill to swallow when one of our precious family members is taken from us, far too quickly. As a collective, we have broken through so many glass ceilings, but in a personal sense, disabled people have become my closest friends, the people I trust most. If I need advice on parenting, on adjusting to life with chronic pain, or even on what kind of dress would suit me, it just so happens, without me thinking twice about it, that I will seek out a fellow disabled person. I have bonded with people over finding the right Personal Assistant, the pros and cons of working freelance, how to pace myself during pain flares, how to eat a healthy diet on a budget and with minimal effort – all things that, with the greatest of respect, a non-disabled person may never have to think about. I have friends who’ve taught me parenting tips; how to maintain my wheelchair; how to apply for benefits and council housing. Sometimes, after writing a disability-related blog, a friend will share it with an organisation or a new group of people, and I in turn return that favour. We’re not all happy-clappy all the time, but we do help each other, and we know we have only to ask.

It sounds terrible, but I’ve developed a sort of “death fatigue”. I’m so tired of bad news, of funerals, of grief. This thought floods my mind as I try to comprehend the loss of Selina Bonnie, who was one of Ireland’s fiercest activists. It still feels wrong to speak of her in the past tense. Not only did Selina fiercely believe in the importance of accessibility, so much so that she worked as an Access Officer in South Dublin County Council for twenty-two years, as a proud Indian-Irish woman, she embodied the meaning of intersectionality, supporting LGBTQI+ rights, as well as becoming heavily involved in campaigning for the reproductive rights of disabled people. 

In fact, she was a proud Ambassador of the (Re)al Productive Justice initiative, a project which is the brainchild of the Centre of Disability Law and Policy (CDLP) in NUI Galway. Through this project, Selina was generous in sharing the physical and attitudinal obstacles she faced in accessing fertility treatment and, subsequently, maternity care, and in doing so has made a real contribution to the advancement of reproductive rights for disabled people. I had the honour of working with her on this project, and I was floored by her boundless energy, her tireless mission to educate others on the importance of a rights-based approach, and her willingness to become vulnerable by allowing her story to be used as an educational tool.

Selina also contributed to Conversations about Activism and Change, and in recent days, I’ve felt simultaneously grateful for and awful about this. When I pitched the idea to Independent Living Movement Ireland, I stressed the importance of capturing a history of disability rights, in our own words. The unspoken insinuation was that over the years, so many stories have been left unwritten and are now lost, with many of those involved in the early days of the movement passed away. In promoting the book, Selina herself acknowledged the loss of these stories, and was adamant that we begin documenting our own history. I only hope that she was happy with how her story was captured, and that Selina’s words inspire future activists for generations to come.

The only thing left is to offer my condolences to Selina’s family and all who knew her and to offer them a virtual hug. I also extend arms around my own disabled family, who have endured too many losses over the years. May we always speak about them, may we live the lives they fought for us to have, and may we continue the fight. Selina, and indeed all the disability activists who have sadly left this world, will never be forgotten, for their activism and their friendship. 

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.

Just a date

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It’s funny how the human mind can make associations, how a chill in the air or a familiar smell can wash over you and bring you back to a time and place that you thought you’d never have the good fortune/grave misfortune of experiencing again. For example, when I see my own breath fog up against the black sky for the first time every October, I know that Halloween is just around the corner, with Christmas nipping furiously at its heels. I know as I chomp on a contraband Easter egg after Alison has gone to bed at night that the slight red tinge in the sky is signalling the arrival of summer. I smell the barbecues, the freshly mown grass, the faint titter of laughter wafting gently through our windows.

And despite the improvement in the weather (well, normally. At the moment it is freeeeezing), I begin to feel cold, heavy, wary. Sometimes I feel sick with restlessness and anxiety as memories, good and bad, swoop in and strangle me until I can’t breathe. May used to be my favourite month of the year, and in many ways, it still is. For me, May signifies the beginning of the end of school and college. It reminds me of a photo that was taken of my brother and I when I was five, celebrating my brother’s ninth birthday on 18 May, just me and him, with an icecream log. Mum wasn’t there because she was recovering from her c-section; my sister had been born almost a fortnight beforehand, on 7 May 1989.

Exactly twenty years later mum closed her eyes for the last time.

I’m sure that it’s an absolute bitch for my sister to have to share her special day so selflessly. I’m sure that no-one wants to sit around moping on their birthday, getting all maudlin about the past. Birthdays should be happy days. Personally, though, I’ve always found birthdays to be a bit of an anti-climax (apart from my 21st when John Paul proposed in front of my family and friends. That was an awesome birthday), to the point where I would actually rather if the day came and went without being marked or acknowledged at all.

And for years I felt the same about my mum’s anniversary, which I try in vain to separate from my beloved sister’s birthday. Can the two be separated? It’s a struggle every year to experience such happiness and sadness at once. How have I managed it? Trying to pretend that the anniversary didn’t bother me, that’s how! Oh so it’s mum’s anniversary today? Well, she was dead yesterday and she’ll still be dead tomorrow, so what difference does a date make? It’s Laura’s birthday, let’s not forget that!

Trying to deny the sadness didn’t work for me in the long run, and last year five years of suppressed emotions hit me suddenly like a freight train. I had to take a considerable length of time off work to feel normal again. Note to the readers: don’t bottle up your emotions. They will come back when you least expect and bite you on the ass. Hard.

For the first couple of years after mum died, I went through the motions. For the first anniversary, I insisted on holding lunch in our house after the anniversary mass for all my relatives so that I didn’t have to face my emotions. It worked; I was so busy in the lead up to the event that I barely had time to think. The second anniversary, I stood beside the grave with my aunt, husband, sisters and brother, then proceeded to go out that night and get wasted (in the name of celebrating Laura’s birthday of course). By the third anniversary, I had an almost three month old baby with terrible reflux and I spent the whole day crying because I felt like an inadequate mother. I had been so hard on my mother and yet, she managed to raise four of us. At that stage, I was seriously debating whether I had it in me to raise one.

Yet somehow mum was there, guiding me. Some days, it just wasn’t enough. I needed to hear her voice. I longed for the opportunity to ridicule her childraising advice. I wanted her to tell me I was doing something wrong, nagging me to the point where I’d lose it and ban her from seeing her only grandchild. I needed her to remind me that I was not alone. And she did, in her own way. I managed to push past the fear and the preconceptions I had of myself, and do the very best for my child, the way my mum did for me.

This year, I will try to embrace the date and try not to suppress my emotions. I promise to allow myself to feel the dread, the sadness, the emptiness. I will grieve for what we lost, as well as what we could’ve had. Most importantly, I will remember that the 7 May is a day of happiness and celebration, and acknowledge that people enter and leave our lives in the strangest of ways. And even though this day is tough, simply because of a date on a calendar, I will be thankful for the fact that I had such a wonderful mother who gave us a sibling who is intelligent, beautiful and loving. (Laura, I can hear your head exploding from here).

For me personally, 7 May will always be a strong reminder that good things happen, and bad things happen, and after they do, all that is left are memories, both beautiful and terrifying.

Rest in peace Mum, and thank you for bringing Laura into all of our lives. I think of you and miss you every single day. And happy birthday sis, make sure you fill your special day with lots of wonderful memories. xxxx