Ten years ago, I was pregnant with our daughter. Having suffered a missed miscarriage the previous summer, we were naturally anxious about this pregnancy, but by March of 2007 I was safely in the second trimester, feeling good and looking forward to our baby’s arrival in July. The incessant nausea and exhaustion that had dominated the first trimester were – thankfully – a memory and I was enjoying having a bit of time just to myself.
Anyone who knows me well knows that I’m a bit of a news junkie (which I may have mentioned here before), but a story which happened on March 30, 2007, either wasn’t much reported (I genuinely don’t know) or it didn’t come onto my radar. Or maybe I read it at the time and then forgot about it. What was this news story? Well, on that day, March 30, 2007, the Convention on the Rights of Persons with Disabilities was opened for signature by the member states of the United Nations. The Republic of Ireland was one of the first countries to sign on that day, along with 81 others. This, you might feel, is something I, as an Irish citizen, should be proud of. Well, yes I am. Or I would have been had I been aware of it. Like I said earlier, maybe I read a news report about this and having read it, promptly forgot all about it. Remember that, its important.
The Convention on the Rights of Persons with Disabilities is described by Inclusion Ireland as “an International Agreement directed at changing attitudes and approaches to persons with disabilities”. Sounds right, don’t you think? Only as it should be. So if Ireland has signed it, what’s the point of this blog post? Well, signing it isn’t the full story you see. In order for it to mean anything in Irish law – for anything to really happen or change – Ireland has to ratify the UNCRPD. And ten years after it was one of the first member states of the UN to sign the Convention, Ireland has still not ratified it. We are the only EU state not to have done so.
To quote Inclusion Ireland again: “The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.” So its a list of RIGHTS for persons with disabilities and Ireland has not ratified this.
If you are wondering what any of this has to do with my being pregnant when Ireland signed the Convention, let me explain. Less than a month after Ireland signed the UNCRPD, we received the devastating news that our unborn daughter had a rare neurological condition and that it was highly likely she would have a significant level of disability. (I’ve written about this time in our lives here) To say we were distraught doesn’t come close. I still don’t have the words to describe my feelings at that time. But, July came and along with it came our amazing daughter Fionnuala. Yes, she does have severe intellectual and significant physical disabilities, but she is first and foremost our wonderful girl.
And over the last ten years we have learnt so much (and still are) and we’ve pushed and argued for services we wanted her to have. And we’ve met some incredible people. And we have seen just how little this State – our State – really seems to care about the rights of persons with disabilities. In fact, it feels like they care about it so little that they haven’t ratified the Convention they were so quick to sign up to. And we’ve learnt that to some people who live in this State, persons with disabilities are not seen as equal citizens, as equal people. (The pitying looks and comments, the parking in disabled spaces when they don’t have a permit, the unquestioning acceptance of the way things are without asking is that actually right… I could go on) And increasingly I find myself thinking that if the UNCRPD HAD been ratified before now, would we have spent so much of the last ten years fighting for services for our daughter? Signing petitions for a variety of disability issues? Going on demos and marches against cuts to services and grants, demanding rights not charity for our daughter and all persons with disabilities in this State? Or would we have been able to use that time and energy and headspace to just enjoy our daughter, to just live as a family?
If you believe that Ireland must ratify the UNCRPD, rather than just reading this and then forgetting it (like I mentioned above), join Fionnuala and me and many many others as we protest at Dáil Éireann, demanding that Ireland ratify the UNCRPD. You may not have a disability, you may not know anyone who has a disability, but please, if you can at all, join us. This is a human rights issue.
Fionnuala will be ten years old in July 2017. She was born with disabilities into a State that had just signed the UNCRPD. Is it not disgraceful that her State has still not ratified it?
Ok. First up for anyone outside of Ireland, the Late Late Show (generally referred to as the Late Late) is a chat show broadcast on our main State broadcaster’s channel at prime time on a Friday night. Its nothing to do with James Corden. I’ll say straight away that I’m not really a fan, I’d look at it if there was someone/thing on it that appealed to me. That isn’t a frequent occurrence.
Next thing to point out is that I support and defend free speech and freedom of expression. So why then am I encouraging people to boycott what is still one of the highest ratings shows in Ireland? Simple, its because of one of tonight’s guests, namely Katie Hopkins. In case you’ve never heard of her, she is, well what is she really? A newspaper columnist, a former EU Parliamentary candidate, a loudmouth, a contestant on various reality shows…… and in my opinion, a professional agitator.
She is famous/notorious (take your pick) for expressing ideas that many – myself included – find offensive. I’m not going to repeat them all here but they include targeting and attacking people for their body size, sneering about the names “lower class” (her words) people give their children, and probably most famously comparing migrants to “cockroaches” and “feral humans”.
None of this is nice stuff to read or hear, but as I said earlier I believe in freedom of expression, so shouldn’t she be free to say what she likes on the Late Late? In principle. yes she should. BUT for me saying those kind of things at the end of a week which saw the election of a man who has been described by one of our Senators as a fascist (hat-tip Aodhan O Riordain) and after a year which has seen a rise in racist incidents in Britain following the Brexit vote, feels like RTE are being sensationalist and giving her a platform to say things which will very likely be inflammatory. Or in other words, giving her a platform in which to spread hate. Not what I expect from our State broadcaster.
Furthermore, I don’t really think she genuinely believes a lot of what she says. I think its said to be deliberately controversial, in order to make a name for herself and get more paying gigs like appearing on TV shows and writing newspaper columns. So why then should we watch someone – indeed waste time on someone – who is only saying stuff to feed their need to be famous?
I won’t be watching. I’ve emailed RTE to tell them why and I’ve tweeted about it too. It would be great if she didn’t trend on Twitter tonight. Publicity is her oxygen. Let’s cut off the supply.
Inspired by Michael Moore’s list of 5 things to do to bring about change, here’s a little list for those of us living in Ireland, although most of them apply worldwide:
1. Inform yourself. That means reading a newspaper/watching the news/not relying on what others tell you
2. Make sure you are on the electoral register. You can do this at checktheregister.ie If you aren’t on the register you can’t vote. Our political system isn’t perfect (none is) but rest assured the mainstream parties will always get their vote out so show that they don’t represent you (if indeed that is the case)
3. Find out who your elected representatives are. That is your TD’s, MEP’s and local councillors. We have Senators too but most of us don’t get the opportunity to vote for them……..
You can do this at whoismytd.com Once you know who they are, contact them about things that concern you.
4. If you were annoyed/disgusted/angered that Enda Kenny congratulated Donald Trump on his election on behalf of the Irish people, then tell him so. His email is email@example.com, Twitter @EndaKennyTD, or Facebook Enda Kenny use the hashtag #notinmyname if you want
5. Boycott the Late Late tonight (Fri 11 Nov) or at least the segment featuring a certain guest, and don’t tweet/Facebook about.. That person thrives on publicity and being starved of it will drive her mad. And tell RTE what you are doing. Email: firstname.lastname@example.org Twitter: @RTELateLateShow
Since the budget on Tuesday I’ve been trying to gather my thoughts on the €5 increase in Carer’s Allowance, but this post from Transitioning Angels says it way better than I could
Ignored. Forgotten. Conveniently overlooked. Set aside. Dismissed. Considered unimportant. Call it what you will, families with children who are disabled and/or have life-limiting conditions were, for the most part, ignored in the 2017 Budget announced here in Ireland on 11 October 2016.
There was a crumb given after parents had to fight tooth and nail – that of medical cards to children who currently receive DCA (Domiciliary Care Allowance) payments – and for those families it does indeed come as a welcomed relief. Having said that, it was something that should have been done from the very start, so for it to finally be done now is a bit anti-climatic. It is still only a nugget given to try and satisfy a famine-like situation.
Families with severely disabled, medically fragile children are struggling financially.
We have many expenses beyond that of the typical family, yet in most cases one of the parents (that is…
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I love to cook (most of the time), I like to try new recipes and taste different things, and while we have had a bit of a lull in the garden this year, we like to grow some of our own food (I’m already drawing up lists of seeds ). I don’t think we are food snobs in this house, and while we don’t have to buy the cheapest (and often worst produced) food on the market, we are cost conscious and try not to eat too much heavily processed food. I freely admit that sometimes we get takeaway and sometimes I bring our daughter to McDonalds (bite me), but overall we try to be aware of what we are eating.
I’ve just started reading Joanna Blythman’s book Swallow This and to say its been an eye opener would be the understatement of the century. If you haven’t read it yet and you care about what you eat, then I’d highly recommend it. It may well put you off some of the food products you might buy on a regular basis, but for all the right reasons. It is most definitely making me reevaluate what I buy and how and where I shop.
This will be a long process I think but one that is well worth it. Along with this, I’ve also been catching up on episodes of Philip Boucher-Hayes’ series What Are You Eating? that was originally broadcast in spring 2016 and has been rerun on RTÉ One lately. I watched one this morning and all I will say is I will NEVER eat a ‘chicken fillet’ roll again. Watch it and you’ll see why. Between Boucher-Hayes’ series and Blythman’s book, I was thinking about food and the huge industrialisation of food production for a large chunk of the morning. In particular I was wondering how the shift from largely consuming home-cooked meals to substantial reliance on quite heavily processed food came about. Then I popped into a supermarket to pick up a few things and while idly browsing in the chilled section I saw this.
Now I’ve eaten some things in my time (especially during the broke student years) the mere thought of which makes me queasy now. But this just looks appalling to me. To be quite blunt I have changed nappies that looked like that. How have we gotten to a situation where this is unremarkable? How have we become so divorced from the basics of cooking (and eating) and food production that our shops are increasingly stocked with this kind of thing? And please before anyone gets on their high horse to complain about me not understanding food poverty and not understanding how hard it can be to put food on the table and being a food snob, just ask yourself two things: 1. Would I feed this to a child? 2. What else could I buy for €5 to make a meal from? I didn’t buy this – maybe I should have done to try it out – but I did have a good look at it and I found it hard to see much chicken in there. I would also wonder as how to filling it is, it looks to have a LOT of sauce which won’t go far to fill an empty tummy at the of the day. And don’t get me started on the marketing tagline “Handmade especially for you”. Handmade? REALLY? If I’d been working in a kitchen and handmade this to serve to someone I’d be ashamed of it.
Why am I writing about our visit to Causey Farm LAST Christmas you might wonder? Two reasons: one, I needed to free up storage space on my phone and there were still pictures from there on it and two you won’t find it until that time is upon us again.
This was the first time we had visited any of the Christmas experiences, and our daughter was 8 when we visited last year. Not that we are grinches or anything (actually I LOVE Christmas but don’t want to see stuff in the shops until after Hallowe’en) but as our daughter has a significant level of disability and does not understand anything much about Christmas, I was reluctant to go in case seeing lots of other (smaller) children really getting into the whole spirit would be too hard. Minding myself is an important part of being a carer after all 🙂
However, Causey Farm do a day at their Christmas Experience for children with special needs from the local area – as far as I can make out they contact local organisations and families get invited that way. We were invited by the respite home our daughter attends. As Causey Farm is only a few miles from us we decided to give it a go. I want to point out here that it was not a free event, all families attending paid.
It was a cold Saturday when we headed over and we were all wrapped up very warmly – and I’d definitely advise wrapping up well, there is a bit of walking between the various sheds and you are on a farm in Meath in the winter. Wellies or at the very least old shoes are also a good idea. Our wee woman is a wheelchair user so she was grand and snug with her lovely wheelchair blanket bag.
Well, it really was a great afternoon. The tour takes you through a number of sheds and buildings starting where the story of Mary and Joseph is told and if my memory serves me well we all sang ‘Away in a Manger’. There are lots of opportunities to see and pet the various animals – and there was even a camel!!! A real live camel in north Meath was not something I ever expected to see.
The passage of time has dimmed my memory for the exact order of events, but you move on to a traditional Irish kitchen at Christmas where the bean an ti talks about Christmas traditions and we all got to stir the pudding.
One of the next rooms is the post room where the elves (who are just brilliant, I don’t know where or how Causey find their staff but these guys were excellent) go through the letters to Santa and ask if the people are naughty or nice. This largely went over our lassie’s head but she certainly picked up on all the giggling and excitement. As for me I was too busy laughing to take any pics.
We visited Mrs Claus and helped her pack Santa’s bag for his trip around the world and then we went to the elves’ workroom. Now this really was superb, its a big old room decorated and laid out with all kinds of Christmas gifts and goodies but the clincher for me were the lists of names festooned all around the room so that every child could find their name (on the nice list of course!) The children are all taken upstairs and slide down into the elves’ workroom but obviously this wasn’t an option for our girlie as the stairs were too difficult for her to manage. It meant that she got extra time to find her name on the list though 🙂
Then we all go through the elves’ door into Santa’s parlour. There are benches for all the children to sit on and listen while the elf (I think ours was called Bubbles) explains to us that this is a big treat to be in here and we have to be REALLY quiet or Santa will hear us. Well you can imagine the kids’ reaction to that! The excited chatter and laughter built up and built up and then! A rope ladder appeared in the fireplace and sure enough the man himself literally came down the chimney. I know I wasn’t the only adult there that day with tears in their eyes at the awe and excitement this produced in the children. Even our little girl, although she didn’t fully understand, knew that something special was happening.
Next we all followed Santa into another room where in turn each family was called up and all the children got a present. Herself can be a little shy at times and doesn’t have many words but Causey’s Santa was superb with her.
The smile on her wee face as she met Santa was lovely beyond words and remains one of my favourite memories. As you can hopefully see Santa came over to her rather than us all getting onto his sofa, which was much easier for her.
The day finished off with complimentary hot drinks and scones back in the main building and for herself a little snooze!
I would recommend the Causey Christmas Experience to anyone. My only reservation would be the price. For families of four children and two adults you are looking at over €100 which is a pricey enough afternoon. But it really is so lovely. I wouldn’t go back every year, I think the magic might get a bit diluted if you did that, but if the time ever comes when our darling girl understands all about Christmas then I don’t care if she is 20, I’m bringing her back to Causey Farm to see Santa coming down that chimney.
Click here for information about Causey Farm’s Christmas Experience
“Hate doesn’t have a creed, race or religion. It is poisonous.” Those are the words at the end of the statement issued this evening by Brendan Cox, husband of Jo Cox, MP for Batley and Spenborough in Yorkshire, England, who was brutally murdered today. Like so many people here in Ireland and in the UK, I am shocked – and that word doesn’t even sum it up – by this terrible murder.
I had heard of Jo Cox a bit before today. I no longer live in England, and when I did, I never lived in Yorkshire, so her constituency is not one I had any links with. But I did see mentions of her since she became an MP in British reporting on social justice issues. When I heard via Twitter that she had been shot I switched on the BBC rolling news channel, hoping she would be ok. When the news of her death was announced this evening I cried. I cried for a woman I didn’t know, I cried at the thought of her two little children, I cried in sheer pain at how awful and hateful this world seems sometimes.
It is less than a week since we woke to the news of the massacre at the Pulse nightclub in Orlando, Florida. That atrocity was fuelled by hate. Next week the UK will be voting on whether or not to remain in the EU. I lived in England until I was 31 and have been following the debate – if you can call it that – closely. During the last two months I have been increasingly horrified at the level of xenophobia, of hate, of lazy thinking, and that immigration has for so many people become the sole issue on which they will decide how to vote. I am not going to speculate here on the man who has been arrested for Jo Cox’s murder, nor on his motives or what he may or may not have said at the time.
I’ve been passionate about politics, current affairs and social justice for over 30 years now. There have been times over those 30 years when truly awful things have happened which I have found distressing and demoralising, but never before have I felt like I have been increasingly feeling over the last few months – a feeling that I want to walk away and leave the rest of the world to it, a feeling that its all hopeless, a feeling that I can’t really have any impact. I’ve been feeling like that (about politics and hatred and intolerance) for a while now but it coalesced today in the tears I shed over the murder of Jo Cox who seems to have been the kind of person the world needs more of.
When I calmed down after hearing the news I commented to my husband that if we did ‘leave the rest of the world to it’, we would be letting the haters win. An editorial about Jo Cox published by the Guardian finished with words I needed to hear tonight: “Honour her memory. Because the values and commitment that she embodied are all we have to keep barbarism at bay.” In Jo Cox’s memory I will not give in to the hate that is so prevalent. In Jo Cox’s memory I will speak out on issues that are important. And in the memory of both Jo Cox and another strong woman who I was privileged to know I will speak truth to power.
Honour her memory.
So for my fourth book of the Modern Mrs Darcy Reading Challenge, I selected the category “a book you have been meaning to read”. My choice was Harry’s Last Stand by Harry Leslie Smith. I’d been looking for this for a while and then my husband got it for me late last year. I wanted to really concentrate on it when I read it so it got put off until April of this year. It was well worth the wait.
Its one of the most passionate, angry, heartfelt books I have read in a very long time. In some places it reads like a rant for which Harry Smith has been criticised in some reviews. I disagree. Yes, there are some passages of the book that come across as ranting but I don’t see that as a fault in this case. Harry is a World War Two veteran and one of the dwindling number of people who clearly remember life during the Great Depression. He remembers – and describes vividly – the appalling poverty and deprivation that was the norm of everyday life for far too many people in Britain in the 1920’s and 1930’s. He is rightly angry at how his family – and countless others – suffered and he doesn’t pull any punches in describing what they went through. His descriptions of the life and death of his sister Marion are simply heartbreaking.
Harry goes on to describe the war years and how new opportunities opened up for him. You can hear real joy when he details the impact that free education and the birth of the NHS (National Health Service) had on the lives of the people of Britain. And you find yourself hoping that all is going to be well. But this is the point where Harry’s anger intensifies as he analyses and agonises over how this is all being dismantled and how he can see the same mistakes and wrongs being repeated in new generations of leaders and how he can see the damage this will do to people.
This is not a gentle read but it is gripping. If – like me – you remember Thatcher’s Britain and can see the same happening again under David Cameron, you will find this book pulling at your heart and hopefully your conscience. If you were born after that time you will find much in this that is thought-provoking. If you are old enough to remember the 1950’s and 1960’s, you will in all likelihood read this and weep. But read it you must.
OOPS!!! Well March kind of ran away with me here, between trying to finish a paper, the Easter 1916 commemorations and my daughter’s school holidays, the month seemed to just vanish. It only occurred to me on 31 March that I hadn’t read a book for the Modern Mrs Darcy Reading Challenge in March. As there are 12 categories in the challenge, I was working on doing one of them each month. I hadn’t even selected a category for March, let alone a book to meet it. I was in our local library with my daughter on said 31 March when this hit me. I know it wouldn’t have mattered if I hadn’t done the challenge in March but I’d made up my mind to do it that way.
A quick hunt on via the iPhone showed me that one category was ‘A book you can read in a day’. Hmmm. It was the last day of March and I was in the library, surely I’d find something I could read and finish before midnight?? Well, dear reader I did. A book by Emma Hannigan caught my eye – the Summer Guest. I had never read any of Emma Hannigan’s books before, but have followed her story through Irish media. You can read about her here I’ve seen her on various TV programmes and often said to myself that I really must read one of her books one day……
And I did read it all before midnight. I liked most of the characters involved and also liked how one of the main female leads (Lexi) was portrayed at times in a way that made me wonder if she was always as nice as she initially seemed. (She is by the way, but I thought the doubting elements and the question of how others perceive us was really well done). The story moves along quickly enough and there were no characters in it that I didn’t get a feeling about. I don’t enjoy a book where I couldn’t care one way or another about the characters. Hannigan touched on a few interesting themes and ideas that I thought could have been developed a bit more but that would have probably taken the story in a different direction. The ending is both happy and sad, and let’s face it, that’s life!
Overall, yes I enjoyed it, I’d read more of hers, particularly on those occasions when I have an uninterrupted hour to sit with a cuppa and something nice and read a book that’s enjoyable and thoughtful but not too heavy.
To explain firstly for those of you who don’t know, I live in Ireland and Easter 2016 is a huge event here as it marks the centenary of the Easter Rising in 1916. I won’t go into all the debates, discussions and arguments here as to whether or not the Rising was a good thing, if you want to read that there are millions of words written on that very subject. Irrespective of anyone’s opinion on the Easter Rising it is irrefutable that it set in train the long, painful and bloody list of events that led, eventually, to the creation of the Irish Free State. Again, opinions on the rights or wrongs of that are not what I am considering here today.
What I’m remembering today is a conversation I had over 20 years ago in Liverpool when I was an undergraduate. It was in the student common room of the Institute of Irish Studies at Liverpool University and somehow we found ourselves taking about the Easter Rising. I vividly remember saying that whatever else might be going on, I fully intended to spend Easter 2016 in Dublin, nowhere else.
Well today is Easter Sunday and I’m not in Dublin. Instead I’m ensconced on the sofa in our living room in Oldcastle, Co. Meath with the television on – telly NEVER goes on here this early in the mornings (9.45am) unless there is a major event happening. RTE (our state broadcaster) is giving full coverage of today’s State Commemoration. So am I disappointed not to be in Dublin this weekend? No, not really. Oh, I imagine the atmosphere in Dublin today and tomorrow will be great and it would be great to be there but with a wheelchair using child, hordes and hordes of people and a LUAS strike, its not the most appealing combination!
But I’m marking Easter 2016 in my own way. Yesterday I gave a paper on ‘Women of the Rebellion and the War of Independence’ at a seminar in Trim. Today is a day to follow it on the telly (I’ll see more anyway!!) and tomorrow, Easter Monday (the day the Rising actually started) I feel very honoured to have been formally invited by the government to attend the official State Commemoration at Ashbourne in Co. Meath, site of the Battle of Ashbourne. Over twenty years ago I never imagined I’d be living in Ireland and not only watching the commemorations but contributing to them in a small way.
You never know where life will take you!