Tag Archives: parenting

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. 

Forgiveness, Please!

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So, where have I been in the monotony of lockdown, I hear many of you ask. Well, like many of you, I have been homeschooling and sorting out my house. Actually, that last part is a lie. I’ve been sorting out my head – after years of using this blog as some sort of replacement therapist, I started talking to a real one, a qualified one instead. If you have the money, I strongly recommend it. Even though I’ve written about my mother dying and the trauma surrounding Alison’s birth/first homecoming, I’ve never relayed any of the feelings behind these things to a professional, and now, at a time when I have far too much time to think, I decided that it was the right time to tackle my demons and get my real life back. And I have to say, it’s going far better than expected. I feel so different, and more like myself. Look, I’m even writing a blog – it’s a miracle!

We started talking about Alison’s birth and the emotional rollercoaster that came with that, the unfairness of the scrutiny we were under and how it affected my mental health to the point where I stupidly fought Postnatal Depression on my own. She responded with things like “that was hard” and “that was so unfair and clearly damaging”, which made me feel validated in what I felt. Then, at the end of the session, she sent me a worksheet – on forgiveness.

My first reaction was, “Well, clearly she wasn’t listening as well as I thought if she thinks for a second that I can forgive the feeling of being scrutinised, not to mention the subsequent three years (and probably longer, if we’re being honest) of depression.” I shut down my laptop, walked away in anger. I’m not ready to forgive, I thought. That time after Alison was born damaged my confidence, and my relationship with my husband and my child. I felt deprived of the freedom to make mistakes like other mothers. I had been subjected to excessive scrutiny, making an already stressful time, even more so.

But a couple of days before my next counselling appointment, I opened up the file again and read it. Forgiveness is not about forgetting how you were wronged, it is about letting go of anger. I realised that I had been carrying anger around for a long time, and that it was now exhausting me. I realised how, sadly, that anger led me to decide that I couldn’t face having any more children in case the same thing happened again. That anger and fear stopped me from seeking help at a time when I needed it most. Every year, I find Alison’s birthday overwhelmingly emotional because those memories and feelings come flooding back.

And I started to think more closely about the anger that I was feeling. I cannot deny that some good things have come from that anger. I started writing about my experiences as a disabled parent because of it. Many of my peers came to me for advice on starting a family and accessing services on the back of those angry words. I became involved in the (Re)al Productive Justice Project, where I spoke about my experiences with the Health services, both positive and negative, and in doing so, highlighting the physical and attitudinal barriers to parenthood for disabled people. I’ve spoken at the International Disability Summer School about the shortcomings of the maternity services for disabled parents. I’ve written blogs and magazine articles. My blog was quoted in an academic study of disabled writers by Elizabeth Grubgeld, Disability and Life Writing in post-independent Ireland. Most recently, my blog was included in a radio segment called “In the Bleak Midwinter,” which documented a range of women’s stories, some of whom had given birth in mother and baby homes. It was the first time that I considered my story to be part of a wider picture, the ongoing injustices against mothers and their children in Ireland. So I am proud of the part my story has played in this wider narrative.

However, if this stupid pandemic has taught me anything, it’s that life is delicate. It’s short. It’s so precious. And now that I am really ready to heal properly, I don’t want to waste any more time seething in resentment and pain. I want to enjoy my life. So here goes…

To the medical professionals who doubted me, and in turn made me doubt myself – I forgive you.

To the Public Health Nurse, for your scrutiny – I forgive you.

To anyone who expressed doubt when I needed your support – I forgive you.

To those who judged me – I forgive you.

And finally – to that face that looks back at me in the mirror every day, who gave your baby the jar food instead of cooking fresh, who gave (and still gives!) their kid way too much iPad time when times got tough. Who saw seeking help as a sign of weakness, who made some crappy parenting decisions (but a lot of decent ones too) – I forgive you too.

And that forgiveness feels so good.

Enough is enough

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I’ve decided to take a career break from work. Six months, to be exact. It’s something that I’d been toying with for a while but couldn’t quite bring myself to do. I work in the area of Independent Living and I’m passionate about the rights of people with disabilities. I love working with my fellow leaders. But I also love writing, and I want to have more time with my daughter, so I’m off. And it is blooming scary, I tell you. Not only because I’m not bringing in a wage, but because I’ve always worked, it’s a crucial part of my identity.

That said, I will never regret all of the time I’m enjoying with my daughter, who is now three-and-a-half and great fun to be around. She’s energetic, imaginative, cheeky, and growing up all too fast. I admit that there was a time when depression clouded my time with Ali; everything seemed hard, an effort; I didn’t think that I was enough for her. But now that I feel more like my old bubbly self again I intend to enjoy every second with her.

Since Alison was born, I’d always been afraid that I’d never be good enough for her. I was overly conscious of how I was perceived as a parent with a disability. I worried that Ali would resent me for having her, that I would become a burden on her. I’m not at all afraid of this now. Today, Ali and I walked to the shop alone together for the first time, me in the wheelchair holding her hand, her on the inside of the path. It was the best feeling in the world, because heretofore I wouldn’t have trusted myself to do this. I am finally starting to see myself through my own eyes again, not through the eyes of others.

It’s amazing how we expect so much of ourselves, but we never step back to admire what we have done. We don’t have time, we are too busy, it’s not enough. For example, I told myself that I would be an established journalist with my first novel written by the time I was thirty. I wanted to be fit and able to walk everywhere unaided so that I could keep up with Ali. Since turning thirty, I’ve been bitterly disappointed in myself that I’ve done neither of these things. It was more than disappointment, it was pure disgust, self-abhorrence. It sounds dramatic, but for months I could barely look at myself in the mirror without this disappointment washing over me.

Recently, however, something changed. And for all the things I teach my daughter on a daily basis, a month ago, she taught me the most important lesson of all.

It was evening-time. Ali and I were watching telly and I said to her, ‘I love you,’ to which she replied, ‘ I love you too mummy’. I thought for a moment. Lately, I’d been feeling grossly inadequate: I’d been in too much pain to play football, too tired to play chasing and I’d say she would have baulked at the sight of another defrosted spag-bol, cooked in bulk about a week before. ‘Ali,’ I said, ‘how would you like a new mummy?’

Ali was intrigued. ‘A new mummy? Is she nice? Who is it?’

I replied, ‘I don’t know yet. But this mummy would be super cool and play football and basketball and chasing and tie up your hair and do your buttons and go for walks. Well, what do you think?’

Ali shook her head and looked at me, placing her small hand gently on my shoulder. ‘I don’t want a new mummy. I just want you.’

Pathetic that I should need such reassurance from a three year old, but little does she know that those four words, ‘I just want you’, have changed my life so dramatically. Physically, the aches and pains seem to have faded significantly. I have more energy and a new positive outlook on life. I feel I can do anything because this little person looks up to me. I just want you.

And being so happy has made me realise that my fantastic husband is still my best friend. He has been incredibly supportive and just wants to see me happy. He is more than happy to see me tapping away on the laptop, trying to come up with literary masterpieces. He never tells me that I am crazy or deluded, though I am probably both!

From an early age, we are encouraged to compete against each other. In school, we are encouraged to study hard in order to be the best. Even under-tens partake in handwriting competitions, poetry competitions and art competitions, we have sports competitions. When we are eighteen, we sit the most competitive exam invented, the Leaving Cert, in order to get high points, to be accepted into a course so that we can pursue a challenging career. We push ourselves to be the best employees, the best friends, the best partners, the best parents, often to the detriment of our physical and emotional health.

And now, I’m saying enough, or more specifically, that I believe that I am enough. I will still give my all to everything I do, but I won’t be beating myself up if I don’t succeed. Today, at least, I feel happy and free, and if my daughter and husband still love me in spite of the self-berating and toing and froing I’ve been doing over the last few years, then I must be doing something right.

The Sarah Fitzgerald Guide to Raising Toddlers

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I would like to reiterate that prior to having my beautiful daughter, I knew nothing about children. I didn’t know anything about pregnancy, childbirth (I now think this worked to my advantage) or caring for a newborn. In fact some evenings, when I tell my husband that I’m working or ‘studying’, my mind wanders and I somehow end up on Google looking up ridiculous things such as ‘normal three year old development’ and ‘how to encourage your toddler to read’. Yep, I’m a little crazy, but Ali didn’t come with a manual and I don’t always know what I’m doing. Do ye?

The best teacher, of course, has been Ali herself. Of course, it’s my job to teach her right from wrong and how to be a sensible, well-rounded person, but she has also taught me so much about the world around me and how to best respond to her needs. I’m not sure if any of the following skills can be applied beyond the privacy of our house, but for those of you with kids that are three or younger, you may/may not find the following advice useful:

*The following is copyright of yours truly and cannot be found on any internet site*

  • You will suddenly find yourself unashamedly fascinated by your child’s toileting behaviour. Pervy? A little, but unfortunately necessary. If you are lax it may result in a disgusting accident that I imagine my childless friends would have nightmares about. For parents of toddlers, it’s just another day at the office. My daughter won’t let me into the bathroom until she has done her business, but the conversation between her, and I standing patiently outside the door, usually goes like this:
    Me: What are you doing, wee or poo?
    Her: Wee
    Me: Did you wipe your bum?
    Her: I’m already dry.
    Me: WIPE YOUR BUM. I’m coming in to help.
    Her: Don’t look at my bum.

On a related note, the luxury of privacy is not afforded to me when I need to go for a piss.

Me: Can you wait outside please?
Her: Mummy, I love you.
Me: I know. I’ll be out in a sec.
Her: Wee or poo? Oh I hear a wee, good girl mummy!

On another related note, sniffing a stain to ascertain if it’s chocolate or poo. Without reservation.

  • Toddlers are particular. Sometimes Ali gets a notion that she can only drink out of a pink cup. She has to have a special pink teddy going to bed. And if you tell them to eat three more bites, they will only eat three more bites.
  • Toddlers don’t understand ‘Mummy’s tired/sore/too lazy to play with you’. Not only do they want you to play with them, they want you to become fully involved in their imaginative play. Now don’t get me wrong, kids are kids, but there is something degrading and plain wrong with crawling on your hands and knees around the garden and mewing like a cat/barking like a dog. What, don’t tell me I’m the only one that does that? Ye haven’t lived!
  • Young children tend to imitate what they see and hear. I was getting a little frustrated the other day and said to Ali, ‘Right, let’s swap places. I’m Ali, you’re mummy.’ Excited by this new game, Ali readily agreed. When ‘mummy’ asked ‘Ali’ to eat her dinner, I said ‘no, don’t like it,’ and pushed away the plate, and  ‘mummy’ responded by saying ‘right. No Jumping Jacks and no playschool any more’ and I just thought to myself,  ‘wow, I am so annoying.’
  • It’s against every rule in the book, but occasionally you will have to resort to bribery. Recently, I promised Ali a few Buttons when she ate all her dinner, and by God, the second the last morsel crossed her lips, she instantly asked for the Buttons. Sometimes, Ali can be disappointed. For example, just tonight I was encouraging her to put on her own PJs and hearing my hubby come into the house, I said, ‘I have a surprise for you’. she put her pyjamas on faster than lightening and her daddy came in, delighted to have made it home for bedtime. Ali looked at him and said ‘where’s the surprise?’ to which John Paul replied ‘I am the surprise’. Thinking we were joking, Ali smiled and said, ‘No, really.’ I felt the love. I know JP did too.
  • Toddlers/young children can be a little economical with the truth. A few months ago, I caught Ali drawing on the floor behind the couch in the sitting room. I of course hit the roof, but Ali said, ‘no mummy, it wasn’t me, it was my friend’. (Ali was holding the marker in question in her hand at the time, and her friend wasn’t in the house, at all). She also told an elaborate lie one evening about a cat who broke into the house and stole her good flowery jacket and carried it off to his family. Damn you, neighbour’s cat and your jacket-stealing tendencies.
  • Toddlers can also be very sensitive. Around the time of my mother’s anniversary, I was a bit teary and Ali discovered me crying in the kitchen. ‘Mummy, what’s wrong?’ she asked. ‘I miss my mummy’ I explained. ‘Oh, here’s a big hug and a magic kiss, and now you feel all better.’ Little hug. Silence. ‘Mummy, are you okay now?’ ‘Yes hon’. ‘Great, you’re Elsa, I’m Anna’. (on a bad day, I’m Olaf the snowman).

Ultimately, raising a toddler has been one of my most interesting and insightful experiences to date, and while I may not always get it right, we all have fun learning through our mistakes. And Alison has tremendous fun testing the boundaries. Well, they say kids learn when they’re enjoying themselves, right?

Alison has not only taught me how to be her mummy, but also how to be a better person. I’ve become more patient, more understanding, gentler (to Alison, anyway. JP may beg to differ). Most importantly of all, she gives me great hugs and superb writing material, so thanks hon. Love you! xxx