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…
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.
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.
My second book for the Modern Mrs Darcy Reading Challenge was From Beirut to Jerusalem by Swee Chai Ang. This came under the category of ‘a book chosen for you by your spouse, partner, child or BFF’. My husband selected this one for me, having read it himself a number of years ago.
It is one of the hardest books I have ever read. Not intellectually, not in the style of writing (which is very accessible), but emotionally it was so so hard. I normally whizz through books and a book of this size (302 pages) written in plain, straightforward language I would usually expect to get through in a few days. This was so difficult to read that I could only manage a chapter at a time.
I knew a little – a very little – about the conflict in Israel/OPT and the wider Middle East. I had heard of the Sabra and Shatila massacres in 1982. I knew that Lebanon had for years, decades maybe, been pulled into and suffered from, conflicts affecting their neighbours. I did not know just how truly horrific it was. Probably still is. Dr Swee writes in a very unsparing way about the numbers of dead following the Sabra and Shatila massacres. She talks of – and indeed includes a picture of – piled up in alleyways. As an orthopaedic surgeon, she describes the horrendous injuries – and their long term implications – suffered by young and old alike.
I could go on but it is better to read it for yourself, to bear witness. One thing I learnt from the book is that as a result of her time in Lebanon, she helped to start up the charity Medical Aid for Palestinians which warmed my heart as a couple of years ago, a local event I helped to organise raised money for that charity amongst others.
This book is not an easy read. But I think that makes it all the more important. Reading about events of thirty years ago and then watching the news and seeing what is happening in Syria, in the wider Middle East, seeing how many refugees have been forced into an already overcrowded Lebanon, seeing the sheer chaos and agony that people are going through on the borders of a greedy bloated Europe, meant that this book resonated with me all the more. It is one of the few books I can truly say has had a profound impact on me.
Read it. And then read more. Watch the news. Inform yourself. Bear witness. It is the very least any of us can do.
Over the course of the election campaign, I’ve been watching politicians from various parties and some from no party on the media. Some of what they have to say I’ve liked, some not so much, and some made me plain angry. No surprises there really. But this time round (and I’ve voted in every election I have been eligible to vote in since I turned 18) I have struggled to decide who to vote for. I have now decided and I will be voting later on today but one thing has really struck me as I’ve deliberated over who to vote for. I will be using my vote today but I will not be playing any positive part in shaping our next Government. And that makes me wonder if our electoral system needs some tweaking.
I live and vote in the Dáil constituency of Meath West. There are 9 candidates seeking election here. Some constituencies have 20 candidates, our neighbours in Meath East have 12 to choose from. I could, if I wished, vote for all 9 in order of preference. On this occasion I choose not to do that. Of our 9 candidates 2 are from Fine Gael, the majority party in the outgoing coalition. I will not be voting for either of them, I don’t agree with them on many issues and one of them I have found to be an utterly ineffectual TD so no vote from me there. We have one candidate from Fianna Fáil and I cannot forget what that party has done in the past. Again, I also disagree with many of their policies. So no vote going there. For those of you unfamiliar with Irish politics, Fianna Fáil and Fine Gael are (currently) the two major parties, so you might see where I’m going. We have one candidate from Sinn Féin. I have voted Sinn Féin in the past and while I do not agree with all of their policies, there is some common ground there. Depending on how things go today (and there are MANY uncertainties in this election) Sinn Féin could well end up as the leaders of the opposition in the next Dáil. But I cannot vote for their candidate here as he and I differ on the repeal of the 8th Amendment which is a red line issue for me.
So 4 down and no vote cast yet. There’s an independent candidate who has not even produced any election literature that I can see (and I’ve looked) so that’s a no. 5 down, 4 to go. The Labour party candidate – and indeed the only woman standing here – hmm, she had a chance of a lower preference from me until I spoke to her at a hustings event and again we differ on the repeal of the 8th. Nope, move along please. 6 down, 3 to go. I’m now left with the Green Party candidate, the Direct Democracy candidate and a candidate from the Christian Jobs and Action Party. I do not believe any political party should espouse any religious belief so that’s a no. (Unsurprisingly, we differ on the 8th too) So I’m left with 2 out of 9. One of these will get my first preference, the other my second. Neither party has – in my opinion – any hope of forming part of the next government. But at least I will have voted.
So, back to my earlier point about maybe our system needing tweaking. There are some parties who DO interest me (actually the Greens come into that category too), such as the recently formed Social Democrats, the People Before Profit movement and the Anti-Austerity Alliance. None of them are contesting this constituency so I can’t vote for them, yet they are the parties with whom I would have the most common ground (in different ways). Should we have some kind of national list system alongside the constituency votes? That way more people might feel like they are actually getting a positive say in who shapes our next government? I don’t have any ideas as to what form that might take or how it might work, but this election has really gotten me thinking.
There are some independent candidates in other constituencies who I really hope get elected (and in some cases re-elected), Katherine Zappone, Carol Hunt, Averil Power, Joan Collins…. to name just a few. Let’s wait and see – I will be glued to the results for the next few days.
The Disability Federation of Ireland has been running a campaign called Disable Inequality prior to and during the general election campaign, asking voters to vote to end discrimination for people living with disability. You might wonder in what ways are people living with disabilities facing discrimination. Take a quick look at the stories that the Disable Inequality campaign are sharing and you’ll see.
I do not have a disability but am the very proud mother of a feisty and fabulous daughter who has physical and intellectual disabilities. If you have children, ask yourself will your child/ren be helped and enabled to achieve their full potential? Children with disabilities are frequently told no they can’t take a certain subject for Junior or Leaving cert because the extra supports they need are not in place. Does that sound fair to you? Children with disabilities (who are still growing) are all too often left months, even years, with too small or inadequate equipment, or face long waits to have physiotherapy or occupational therapy. Does that sound fair to you?
Some children with special needs have to attend special school (like our daughter does) as their local school cannot provide the assistance and supports they need to achieve their full potential. That means they don’t get to go to school with their siblings and neighbours. Does that sound fair to you? In our case, our daughter’s school is 26 miles away. That is a round trip of 52 miles each day. 5 days a week. That is 260 miles she travels each week just to attend school. She has been doing this since she was five years old. Does that sound fair to you?
If children were facing these issues around equipment, therapies, appointments, schools because of their ethnicity or religion there would (hopefully) be an uproar. Yet when it comes to our children with disabilities we are told its all due to budgetary cutbacks and to staff shortages and to ‘the system’. If you get the opportunity to talk to a candidate in the next two weeks, ask them what they and their party if they have one are going to do to end this discrimination. Or contact them and ask. During the marriage referendum campaign last year I recall seeing a poster that said ‘Let’s treat everyone equally’. I hope I live to see the day when that really happens.