Remembering John Doyle

It was October 13, 2016. Martin Naughton had just died, and the entire disability community was in mourning. Martin’s death was at a time when I had made a monumental decision, for the thousandth time. I was ready to kiss the world of disability activism goodbye and become a full-time freelance writer. I had spent too long caring about the degeneration of the philosophy of independent living. I had blogged about it, spoken about it and still I felt empty inside, as if the wonderful, magical world of Independent Living only existed in fairy tales.

A week later, I received an email from the wonderful Susan O’Brien in Carmichael House Centre for Independent Living (or Independent Living Movement Ireland as it is now known) asking me if I would be interested, along with other activists, in organising an event to pay tribute to Martin, who was considered to be the Irish Father of the Independent Living Movement. I accepted Sue’s kind invitation, and a week later found myself sitting like an imposter among some of the greatest activists in Ireland: Dermot Hayes, Ann Marie Flanagan, Mick Nestor and the legendary Shelly Gaynor (Shelly had been to the forefront of many protests against cutbacks to Personal Assistant Services). There was another man there who seemed oddly familiar: even though I’d never met him before in my life, I felt like I’d known him a long time. His name was John.

As the group discussed plans for the memorial event, John’s enthusiasm struck me and inspired me to volunteer to manage the social media and create a blog for the event. I felt more confident in my own voice and started to open up and share my ideas. In December 2016, I started talking to John over Facebook about how disillusioned I’d become with Independent Living in Ireland and how I felt that things had become overmedicalised.

“We are the experts in our own lives,” he said. “The HSE supports the medical model. They will never understand the true meaning of Independent Living or rights.” I offered the idea that we could educate those within the HSE, but John was having none of it. Over the following weeks we fought, we clashed, we agreed on some points. John said that it was important to have those conversations, to make things clearer in my own head.

At this point, there was talk of me joining the board of CIL Carmichael House, in early 2017. I was having serious doubts about it and John, who was concerned about me, asked me why.

“John, I’m not experienced enough to go onto any board, let alone onto a board of an organisation I’ve respected for years. Sure, I can talk the talk but I haven’t done anything tangibly constructive for the movement the way the others have. I don’t know what I’m doing.”

John wrote back: “Nobody knows what they’re doing, not at first anyway. Martin spent his life taking risks, and look how that paid off! You have such passion. Let that drive you.”

But I still didn’t feel worthy so I shied away from the Board. Determined to give something back, however, I instead threw myself into the memorial event. As a group, we named ourselves “By Us With Us”. In addition to managing the social media for the event, I wrote and consequently performed a dramatic monologue, which was close to the bone as it explored the damage caused by internalised oppression when Alison was born.

The months flew by. Before I knew it, it was May 2017 and I had not seen John since February. Nor had I heard much from him. In August, I was devastated to learn that John had lung cancer. My mum had that too. Generally, the prognosis for lung cancer is not good. Naturally, John pulled away from the organisation of the event.  Before this, he had been guiding me in managing the blog and Facebook page. His silence was eerie.

Not wanting to bother John, I asked other friends how he was doing. Apparently he was trying to put a brave face on it but he was terrified. I continued working with By Us With Us and getting to know Shelly. Soon, I would not be able to imagine my life without her as a friend, and she remains a massive part of my life.

Finally, the big event came on 23rd September 2017, and with it came my dramatic debut. It was so raw. The pain was supposed to be that of my character’s, but it was obviously I who was crying on the stage, not “Rachel”. The performed drained me and much to my disappointment, I had no choice but to miss the rest of the event and take it easy. At nine o’clock that evening, my phone pinged: a message from John. All it said was “I heard you were brilliant, well done Sarah”.

That was the last I ever heard from him.

John died on the night of 26th November. My heart ached, and I couldn’t say why. I barely knew the man; realistically I only met him face-to-face a handful of times. I cried when I heard. The thought of his children facing the rest of their lives without their dad, the loss within a disability community that had lost so many people, including Eugene Callan, four days after the memorial event.

For some reason, John’s death angered me. I began to think of all the disabled people I knew,  young and old, who were grappling with the same shite that disabled people grappled with thirty years ago. How could there be so little progress between my generation and John’s? As if possessed by some intangible demon, I sat at the keyboard and typed blindly, my own salty tears stinging my eyes. I could hear John saying (though I can’t remember whether he actually said this, or if he implied it), that from the cradle to the grave, all disabled people seem to do is fight.

I didn’t dedicate the poem to John openly at the time. I felt I had no right to. I barely knew the man. Others had a historical connection to him that I didn’t have. So I shared it, but didn’t mention John.  Now, I dedicate this poem to John, two years after his passing.

In 2018 I was asked if I would like to join the Board of Independent Living Movement Ireland. Again I said, “Others have more experience than me.” Shelly’s response was the exact same as John’s had been and I felt that he was there, dragging me back to the world of activism which frustrates me and makes my soul sing in equal measure.

As a movement, we have made fantastic progress. Last week saw the passing of a motion in the Seanad that represented independent living as a fundamental human right for disabled people rather than a service that is granted on a whim by the powers that be within the HSE. This was always John’s dream, and now it’s up to all of us to make it a reality – to continue to fight, fight, fight.

Rest in peace friend (and thanks so much for the poetic inspiration – one of my favourite poems yet).

Memories on a Birthday

 

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

 

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

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

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

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

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

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

 

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

 

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

 

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

 

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

Mama Mia!

Since writing my last blog post, I feel somewhat lighter, happier, as if I have been freed from a horrible prison. And now I have the confidence to say that there are days when I, an amateur mummy, worry that I’m doing the wrong thing. Have I allowed Ali to eat too much chocolate today? Is that glue toxic? Where did she pick up  on that phrase?  and so on.

I was never under the illusion that motherhood was easy. In fact, I imagined it to be so much worse than it is. Until I had Ali, I didn’t ‘do’ kids. They were dirty, nosey, smelly creatures who pervaded every area of your life. However, no words could describe the love I felt when the nurse placed her in my arms. Suddenly, it felt as if I had changed. I was not Sarah any more, I was Alison’s mummy. And my own mummy was not there to tell me what to do or how to cope with this shift in identity.

It’s almost obligatory at Christmas to think of loved ones who have passed away. In my case, the feeling of loss is intensified by the fact that Mum’s birthday is this Monday 15th December. She would’ve been 57, only a ‘young wan’. It doesn’t help that her favourite Christmas song is ‘Fairytale of New York’ which so happens to be played everywhere about fifty times a day in the run up to Christmas. People look at me in shock when I don’t squeal in delight when it starts. Well, now you know why.

Becoming a mummy myself has been the greatest privilege of my life, but constantly wondering if I’m doing the right thing can sometimes be draining and isolating. Torturing myself by saying ‘I can’t even ask my mum’ doesn’t really help, all that does is send me into a self-pity fest. I find myself wondering how she did it with four; when sometimes I struggle with one, bearing in mind that I have Cerebral Palsy and wasn’t always the self-sufficient being I am now.

There was many a time when I truly resented my mum. Like all the times she made me attend physiotherapy and speech therapy after school when I really wanted to be at home writing poetry. Like the times she made me type out my homework on an old Sirius computer with an eerie green and black screen, when I wanted to write in my copybook like my classmates (to me it’s all the better if the teachers can’t read it). The final straw was when she sent me to the National Rehabilitation Hospital when I was sixteen, for intensive physio, speech and occupational therapy. I was livid because I was missing school, and the auditions for the class play (which I had written). Surely I, living with the disability day in, day out, know best what I need? Mum didn’t seem to see it this way.

Mum pushed me hard, often to the disgust of other parents. ‘Keep that foot straight’, ‘Speak slower’, ‘Look at what you’re doing’, she would bark at me. I would give her the doe-eyed look, the one that said, ‘You heartless bitch’. She seemed to find this hilarious. She revelled in this bitchiness. Often she and I would be about town and somebody would come up to her and say something like, ‘I feel sorry for the poor creatur.’ To which mum would respond, something along the  lines of, ‘You feel sorry for her? What about me, I have to put up with her all the time!’ or ‘My daughter doesn’t need your pity. She has more brains than the two of us put together!’

My mum was not just a mother. She was Una, a sister, a friend and a nurse to half of Tullamore at some stage. When I was pregnant, all of the nurses in the outpatients department had stories to tell about her, which usually ended in ‘well, I will never forget how your mother helped that man/woman that day.’ Mum used to tell me that nursing broke her heart. She listened to so many stories and carried them with her to the grave; to this day I couldn’t tell you any of them, but I know that some of them affected her deeply because she told me so.

Mum was elegant, witty and caring; she could also be forgetful and embarrassingly inappropriate. She spoke her mind at all times, which often had hilarious consequences. She wasn’t perfect by any means, but I couldn’t have asked for a better mother. She is the reason I am who I am today, and if I can do half a good a job with Ali as she did with me, then I would be a very happy camper.

So happy Christmas, I love ya baby, I can think of a better time, when all our dreams come true.

Happy birthday Mum. You may not be twenty-nine and a bit, but you will never have to use the purple rinse either. Thank God for small mercies.