Feminism · General Election 2016 · History · Parenting · Politics · Special Needs

#GE2016 part one: what kind of voter am I?

Here in the Republic of Ireland we have a general election looming. It was finally declared this morning and will take place on Friday February 26th. Consequently I will be glued to the TV on Sat 27th, Sun 28th and quite possibly Mon 29th depending on how long it takes for all the counts to be concluded and the results finally known. (For readers unfamiliar with our system, we have multi seat constituencies and vote by proportional representation so it can take awhile. For political nerds like me that’s part of the fun.)

Along with the various candidates clamouring for our attention and promising us the sun, the moon and the stars, or least promising that they aren’t as bad as the other lot, a number of organisations have campaigns running either asking candidates to make various pledges or asking voters to highlight the issues that matter to them. Reading through some of these made me think about the issues that will decide how I use my vote this month. I WILL use my vote – I have voted in every election I have been eligible to vote in – but as yet, I am uncertain which way it will go.

In an attempt to tease out some of my thinking, I’m going to look at some of the issues/ideas/ways in which my vote might be influenced. A lot of psephologists and political analysts talk about there being certain ‘types’ of vote – so what kind of voter am I?

I’m a woman. I’ve often wondered if there really IS such a thing as ‘the woman’s vote’. It implies that women will vote the same way or at least be influenced by the same issues when deciding how to vote. I don’t know if that has ever been true. The National Women’s Council of Ireland have asked candidates to sign up to their Breakthrough Manifesto for Women, all of which I agree with. At time of writing none of the candidates declared for my constituency of Meath West have signed up for this. I know women who will not agree with all of the points in this manifesto, but we are all women voters – so is there really a ‘women’s vote’? Should a woman vote for a candidate simply because she is a woman? No – there are some women candidates who, if they were running in my constituency, I would not give any vote to, because their policies and beliefs are so far removed from mine that they would not be representing me.

I have a child with special needs, and am her carer. This will be one of the biggest deciding factors for me when using my vote. I wholeheartedly support the Disable Inequality campaign to end discrimination for people living with a disability. In case you think such discrimination does not exist, ask yourself do people with disabilities have the same access to education, training and employment as everyone else? (The answer is no by the way). Ask yourself, do people with disabilities struggle financially? (That’s a yes – the burden of paying for extra heating, housing aids and transport means many families with a member with a disability are struggling) This week when the country has been shocked by the terrible story of alleged abuse of children and adults with intellectual disabilities, Inclusion Ireland has released its manifesto for the election. It makes sobering reading.

I’m middle aged (and proud of it! Think of the alternative!) – is there a particular voting trend or voting appeal that should apply to me? I can’t think of one. Does being 44 (nearly 45) mean I think and hence vote a particular way?

I live in rural Ireland, on the edge of a small town with a rural hinterland. I am not originally from rural Ireland but have chosen to settle and raise our daughter here. That surely implies a commitment to rural Ireland, I could have just as easily chosen to live in a large town or city. I have no connection to farming, I don’t follow GAA (ok I like to see Meath win), I’m tired of hearing about ‘blow-ins’ who don’t understand the community they live in. Surely a community is not something set in aspic, surely it changes and adapts to those who live in it whether or not their families have lived there for generations. Those who wish to represent rural communities would do well to remember that these communities are not homogenous. Yes, many of the so-called rural issues are important to me – better public transport, the effects of the economic downturn and how long it is taking to see the promised upturn in some areas, employment, migration etc. But these are not the only things that will determine how my vote is used.

I want full equality in education, and support the campaign by Education Equality for the ending of all religious discrimination in State-funded schools. I would be delighted if the Education Equality campaign would also look at the issue of special schools and religious ethos.

To sum up then, I’m a middle aged woman living in rural Ireland with a child with special needs. I want to see full equality in our education system, an end to the inhumane system of direct provision and the repeal of the 8th Amendment. I care about where our food comes from and what we are doing to our planet. I’m not motivated by the acquisition of wealth and am passionate about making our history and heritage something that can be appreciated and cherished by all. What kind of voter am I then? I suppose what I’m trying to say here is that voters don’t fit into easy little boxes for canvassers and pollsters to tick off. We are more complex and have a range of issues that will affect our votes.

So, candidates of Meath West, what can you do to win my vote? You have 24 days including today and polling day. It’s over to you!

Feminism · Parenting · Politics

Why I won’t stop crying

I don’t know where to begin or even what I want to say. Like so many others I feel utterly useless today. Here in the privileged bloated West we have seen a picture of a little boy, a beautiful little boy lying face down. He looks utterly relaxed, his hands turned palm up, his wee feet stretched out. I’ve seen my own beautiful child lying in a similar position so many times. The difference is she was in her cot and then later in her bed, or on our sofa. Safe and warm in her own home. But that wee boy is lying on a beach in Turkey and he is dead. He drowned as a refugee trying to escape to safety. His brother and his mum died along with him.

But what can I do? That’s a question many people ask themselves about all the pain and suffering we see in our world. Can I stop the refugee crisis? No, of course not. Can I go to help? Apart from the fact that a well meaning but untrained volunteer is the last thing that refugees need in their faces, my own family circumstances mean I can’t travel to Syria or to Lebanon or to Calais or to any of the many many other places around the world where my neighbours need help. I can donate money to various charitable organisations, I knit hats and jumpers for a little charity in Turkey that helps Syrian refugees in camps there. I can help organise collections of much needed items in my local community and get them to people who can get them to Calais. I can organise grocery shopping for the women’s refuge in my county. I can go to coffee mornings to help children with illnesses and disabilities. I can do all of these things and I try to.

I wonder is the most important thing the one that in many ways is the easiest to do.  I can and will bear witness.  I will not turn away when I see these pictures.  I do and will continue to get angry, to question, to ask, to read, to listen, to think and to learn about why such things are happening and what we as a world can do to help our sisters and brothers.  I encourage, no I implore everyone reading this to do the same.  Don’t turn away and bury yourself in a superficial world of entertainment, so called reality TV, celebrity happenings and other amusing stuff.  Yes that all has a place but don’t ignore what is happening in the world.  Don’t think you can’t do anything.  You can.  You can bear witness.  You can get angry and demand answers.  You can let those in power know that you are watching.  For those of you in Ireland, you can sign this petition and demand that our Government allow more than a few hundred refugees in to our country.

I cry every time I see that picture of little Aylan Kurdi. And then I get annoyed with myself and vow not to cry any more, my tears are useless, they don’t achieve anything. Then I realise that the day I stop crying for the wrongs and injustices in this world is a bad bad day.

read feel act
POSTSCRIPT:

Members of the Irish Parenting Bloggers have come together in a blog-hop to share their thoughts on the current crisis and to let people know what they can do to help. Click on the link below to read our posts and please feel free to spread the word by sharing on social media platforms using the hashtag #ReadFeelAct.



If you want to do something to help, here are a few suggestions:

  1. Sign the petition to ask the Irish Government to do more to help. Just click here.  For anyone in the UK you can sign a similar petition here
  2. There are numerous charities helping the refugees crossing the Mediterranean sea. Please, please donate even a few euro to Medecins Sans Frontieres, Amnesty International, or Trocaire.
  3. Alternatively, if you’d like to be part of a very worthy organised event the Irish Parenting Bloggers have organised a virtual coffee (or tea!) morning – check out and ‘like’ the Facebook Event page here  –  to help raise much needed funds for the Ireland Calais Refugee Solidarity Campaign. On Friday, September 11 just pour yourself a cuppa; go to http://www.irelandcalaisfund.ml/ and make a donation to the fund (we suggest €5 per person but please give what you can) and upload a screenshot of your donation plus a pic of yourself enjoying your cuppa to your Facebook page or other social media channels and tell your followers all about it.  Then just link to this event to encourage your friends and family to take part too.
Parenting · Special Needs

It’s oh so quiet

It’s oh so still.  I’m all alone and so peaceful until…… (Apologies to Bjork!)

Yes it’s the first day of the school year and many parents all over Ireland are heaving huge sighs of relief, we did it, we survived the summer and now normal service can be resumed.  A lot of parents I know really miss their children in term time and find days like today a bit hard.  I freely admit that while I adore and cherish my beautiful daughter I find the summer holidays in particular hard at times and I love to see her going back to school.  This year the weather really wasn’t great and there’s no pleasure in taking a wheelchair out in the rain.  We didn’t have a break away as we are (or more correctly my husband is) doing a lot of work on the house, so it felt like a looooong time.  Or at least it did to me.  What I found the hardest was the lack of headspace.  My daughter is not a particularly demanding child, or even hard to amuse and deal with, its just that her level of disability means she needs me a lot.  That’s fine and I am well used to it but its still a bit of a shock to the system to not have any free time really.  As she is my only child, once she is at school my time is largely my own.  (housework, gardening, cooking, community work, historical research to keep my brain going, crafting….)  So even though I knew that wouldn’t be the case over the summer it still hit me quite hard and I am afraid to say I was a bit short-tempered at times as a result.

Then it occurred to me as I was driving home from taking her to school (I like to take her in on the first day) that she probably (hopefully) hadn’t noticed any of my stressy frustratedness at all.  So maybe I need to plan better for the summer break?  Clear the decks of various projects over the months leading up to it and say to myself, ok this is downtime and even though I might not get much headspace – to blog for example! – it might not matter so much.  Hmmmm.  Something to ponder while I enjoy my third cuppa in peace – bliss!

Parenting · Special Needs

If your child goes to special school……

When it became apparent that our little girl would not be able to attend mainstream school owing to the level of her disabilities, we adjusted our ideas and hopes for her and began to explore what options were open to us.  In our county, there are two special schools, one of which caters for her level of disability.  It is an excellent school and she is very happy and settled there.  There are some things that I hadn’t really thought about prior to her starting school that you miss out on when your child attends special school.  Some are small, but not insignificant, others are quite big.

1. School gate chats and getting to know other parents.  Our daughter’s school is 26 miles from home.  She, like most of the other children who attend the school, is driven in by bus.  That obviously takes a great strain off parents but it also means you miss out on the informal chats and networks that often develop amongst parents. Our school has a good Parents’ Association, but again the distance can make it hard for people to attend meetings.

2. Usually you have no choice about which school your child attends.  Now I know that many parents around the country whose children attend mainstream school have very few  – if any – options.  But when your child has to attend special school, it feels like the idea of even HAVING options goes completely out of the window.  Parents of children in mainstream schools may wish their child to attend a certain school for religious reasons, or they want education through the medium of Irish, or they want a school in a particular geographical area, or one with smaller classes.  Whichever of these reasons is paramount to them (and of course many parents are perfectly happy with their local national school, which is great), at least they have options they can investigate.  That option is not open to parents whose children have to attend special school.  As I said our county has two special schools, but only one caters for children with our girlie’s level of disability.  So that was our only ‘option’.

3. Your child may well have a lot of travelling to get to and from school.  In our case, as I said above, the school is 26 miles from home.  That means she leaves home at 8am and is back around 3.30pm.  That is quite a long day for a small child, and she was only just over 6 when she started there.

4. The thing of not getting to mix regularly with other parents means that you don’t get to know the parents of your child’s classmates.  So organising to meet up outside of school – which can be a great social thing for both parents and children – is often non existent.  And inviting your child’s classmates to a birthday party?  How, when you don’t even know their parents?

5. It takes your child away from their home community.  That means that other children of her age in our town don’t know her and she doesn’t know them.  That means no playdates (much harder with a child with special needs, I know), no involvement in our local school which is a big part of any community.

Please don’t misunderstand me, we are very happy with our school, our daughter is very settled there and has made fantastic progress since she started.  I hope this post doesn’t come across as a ‘poor me’ post, its not meant to.  Its just that there is so much that we all expect to experience as part of parenthood, that for those of us whose children attend special school, we can never have.

 

Parenting · Special Needs

An apology to my daughter

Darling girl, I am sorry that Mummy hasn’t been in good form today. I am sorry that I said no to reading Little Miss Sunshine for the tenth time in a row because I felt like my brain would explode if I did. I am sorry that I just could not face singing Baa Baa Black Sheep again even though you asked me to in your own sweet way. I am sorry that I had to take you into the community office today so I could catch up with what has been happening, I know you were bored.  I am sorry that I had to spend nearly an hour on the phone earlier trying to sort out an urgent problem with a piece of equipment and that I couldn’t play with you while I was doing it because there is only one room in the house I can get a clear mobile signal today.  I am sorry that I was short-tempered with you when you decided to wake up just 10 minutes after snuggling down with your blankie for a nap and my much needed cuppa was less than half drunk.   I am sorry that I scared you earlier when I burst into tears of pure frustration because I can’t get anyone to tell me when the missing piece of your new equipment will be here and what I am supposed to do now that the old one broke today.

Daddy will be home soon and Mummy will go out for a walk to try and get rid of her bad mood.  And then tomorrow we will go into battle with the system again.  Tomorrow will be a better day sweetheart, I promise xxx

 

Books · Parenting · Special Needs

Be careful what you wish for! My book loving daughter

Anyone who knows me even a bit knows how much I love books and reading. Friends have been known to post things like this on my Facebook page: books

Anyone who has been to our house has seen the evidence of that for themselves as shown by the bookshelves in our room, our daughter’s room and our living room. Exhibit A m’lud:

books, reading, bookshelves
You can never have too many books
In my defence, not ALL of these are mine. Just most of them.

My husband suggested buying me a Kindle or similar for my birthday a few years ago but I wasn’t keen. He was surprised, having thought (quite logically) that I would love to be able to have loads of books literally at my fingertips anytime I wanted. But I like the physicality of a book. I love to turn the pages (and I will admit I am terrible for dog-earing books) and curl up with a book on my lap. Somehow an electronic device just doesn’t feel the same. Yes I have definite Luddite tendencies too. I’ve always loved books and was able to read independently from a young age. It does occasionally cross my mind that maybe I use books as a way of blocking out the rest of the world – but then again maybe that’s just so I can have more time for reading!!

I’ve never had much interest in clothes/fashion/make up etc and the idea of spending a day shopping as a pastime fills me with dread. Unless of course its bookshops. I genuinely find it hard to pass a bookshop, especially one I’ve never been in before. I have library cards for Meath, Westmeath, Cavan, Fingal and Dublin City libraries. And at present I have books from most of these on my desk….

books, library, libraries
The current stash of library books

So as both of us are book lovers and read voraciously as children, we fully intended that any child of ours would be encouraged to love books and reading too. As regular visitors here will know, our gorgeous little daughter has intellectual disabilities and cannot read yet. But she adores books and being read to and will ‘read’ to herself in her own little way. Naturally we are delighted by this, apart from the sheer enjoyment she gets from it, this also helps with her speech and language development as well as her fine and gross motor skills. Oh yes, any activity can be counted as part of the home therapy programme 😉

When we moved into this house, I quickly identified two favourite spots for reading. I will read anywhere, but there are two favourite spots I have. One is on the landing at the top of the stairs right under the window. This gives me lots of natural light and also easy access to the books upstairs. The other is on the sofa under our living room window. After our daughter was born my reading time inevitably dropped dramatically for a good while but thankfully as she settled into a regular nap routine, I was able to get back into it. As she got bigger and eventually began to sit up on her own and then progress to moving around a little bit, my reading again became more confined to a few snatched minutes here and there. It was at this stage my husband became accustomed to finding four or five books left open at various places around the house, this was so I could carry on reading wherever she wanted to explore. And no I was not being a bad mum by reading while she was exploring, its just that there are only so many times you can feign fascination with opening and closing the same drawer and besides she seemed to get more fun out of doing it herself.

About 18 months ago, our wee girl decided for herself that if she wanted to ‘read’ one of her books or have one read to her, then there was only one place that should happen. On the sofa under the window, i.e. one of my favourite reading spots. This has now progressed to the point where the first words she says every day when she gets home from school are ‘book’ followed by ‘sofa’. I fear I may have created a monster. So now I cannot sit and read on that sofa while she is in the room unless she is engrossed in something else. As she is now able to get to her books unaided, select one and then climb onto said sofa, I have increasingly found I am being asked to vacate sofa so she can have it. This either comes in the form of a gentle shove (which is a great game) or occasionally the ‘request’ “Get off”. Charming. At least when I go searching for a book, I put the others back on the shelf, not like a certain little person! children's books, books, reading

And then the other day I caught her. Sitting cross legged (v cute) on the landing under the window ‘reading’ the book that was on my bedside locker. I may have to accept this is a battle I will lose.

Parenting · Special Needs

So the sleepover went great ….

You might remember last week that I posted about my little girl going for her first overnight respite and that I was a bag of nerves over it, well you’ll be pleased I hope to hear that it all went just fine, although I will admit I had zero concentration that evening for anything very much!

I wasn’t surprised to hear that she had good fun in the respite home and went off to bed just fine and slept well, I know her well enough by now to know that she is generally a happy, easygoing little person who takes change in her stride. I will admit to a little pang when I got the text to say she was fast asleep – not that I wasn’t delighted and relieved – I was – but there was an element of ‘did she not even miss me??’

So that’s another hurdle crossed, Fionnuala flew over it and Mum struggled and stumbled but got there in the end. Phew!!!

Parenting · Special Needs

Where is the equality??

Like most evenings, I watched the Six-One news earlier tonight. (For those of you outside Ireland, this is the main evening news programme on our main channel) I am often angered, enraged, upset or saddened by what I see on the news. Equally I am often cheered, amused and intrigued. But tonight’s programme left me feeling depressed and hopeless.

Tonight’s lead story was a report on HIQA inspections of Aras Attracta and St. Peter’s, both residential units for adults with intellectual disabilities. The findings of these inspections are beyond shocking. At St. Peter’s there was ‘major non-compliance with regulations’ and incidents including unexplained bruising on a resident, nutritional needs of residents not being met, access to fire exits, safety issues, weak governance and management…… I could go on. You can read the report for yourself: https://static.rasset.ie/documents/news/4904-10-december-2014.pdf

At Aras Attracta which had been the subject of a truly shocking documentary in December 2014, an unannounced inspection in January found a number of causes for serious concern, also including some points of major non-compliance. This report can be seen here https://static.rasset.ie/documents/news/4910-14-january-2015.pdf

This was hard enough to watch and hear, but two later stories in the programme affected me too. Parents of children with special needs in parts of Dublin are having to campaign about inadequate provision of respite services owing to changes in facilities and the non-opening of another facility. Parenting a child with special needs is hard bloody work without having to fight for the little bit of respite that should be available. This report was followed by the awful story of what I can only describe as a disability hate crime, where a teenage boy who has autism was attacked by a group of other teenagers who forced twigs into his mouth and forced him to expose himself. The attack (I will not call it an ‘incident’) was filmed and uploaded to social media. There are no words to adequately express my disgust at this.

Now, any one of these reports is terrible to hear – I suppose we should be at least thankful they are reported at all – but to have three reports on our main national news all of which show that people with disabilities 1. do not get the services they need, 2. are all too often using services and receiving levels of so-called care that do not meet their needs and do not allow them dignity, and 3. are the target of hate crime leaves me sickened to my very core. This is the country our daughter – who has physical and intellectual disabilities – is growing up in. On days like this I am terrified for her future. Since she was born we have done everything in our power to develop and encourage her independence. All I want to do tonight after watching the news is hold her tight, keep her with me and never let her go.

Parenting · Special Needs

Fool Me Once – replace the Lunacy Act

There has been some outrage and considerable upset and distress in recent months here in Ireland with the broadcast of a documentary showing appalling treatment of residents with intellectual disabilities in Aras Attracta and most recently the findings of a HIQA inspection in St. Peter’s Care Home in Castlepollard, Co. Westmeath. I am not going into the issues raised in these reports here, to be honest I don’t even know where to begin with how they made me feel and what it all might mean for my daughter in the future.

No, today I just want you to THINK about something, and then DO something. In the media reports of the above cases the people who live in these facilities were largely referred to as ‘residents’. On occasion some commentators referred to them as patients which is not ideal language. You might be thinking, well residents, yes they do live in these places after all. They are all people with intellectual disabilities. You might wonder is there a generic term, a single word, to describe these people. Well, no there isn’t and there shouldn’t be.

Except when it comes to a piece of legislation that dates from 1871 and is still on our statute books. The Lunacy Regulation (Ireland) Act of 1871 was enacted in the Victorian era to protect and manage the state of lunatics. It defines a lunatic as a person found to be “idiot, lunatic, or of unsound mind, and incapable of managing himself or his affairs” today the courts service lists the reasons for peoples’ admittance into Wardships as ‘elderly’, ‘intellectual disability’, ‘psychiatric illness’,or ‘acquired brain injury’.” You can read all about this in more detail here. Inclusion Ireland, along with a number of other organisations, is campaigning to have the Lunacy Act replaced with the Assisted Decision Making Bill.

If you watched the documentary about Aras Attracta or read about St. Peter’s in Castlepollard, ask yourself this: should those people be described as lunatics and governed in part by a piece of legislation which does not seek to involve them in decision making at all? Or should they be assisted in making decisions about their lives, something that the rest of us take for granted we can do? I know what I think and what I want to see happen.

Yesterday marked the 8th anniversary of Ireland signing the UN Convention on the Rights of Persons with Disabilities (CRPD). Ireland has yet to ratify the CRPD. One of the things stopping Ireland from ratifying that convention is the Lunacy Act. If you agree that the Lunacy Act should be replaced by the Assisted Decision Making Bill (a Bill which, by the way, was introduced by the current Government in 2013 and remains at committee stage), then please, now that you have THOUGHT, DO something and sign the petition http://www.ipetitions.com/petition/replace-the-lunacy-act

And then urge others to sign. Thank you.

Parenting · Special Needs

A big day today and I’m a quivering wreck

Parenting brings with it lots of ‘big days’ – first day at preschool, then at big school etc, and these are bring up a huge swell of emotions for parents. I bawled on my daughter’s first day at preschool – but not until I got back in my car. She didn’t turn a hair when I left. Big school was very emotional but not teary. But today brings another big day for our little family and I freely admit I’m a wreck over it.

Our feisty little big girl is going to overnight respite for the first time. This will be the first time she has stayed anywhere without Mum and Dad. This will be the first time anyone else will have ever put her to bed or gotten her up in the morning. She has been to the respite home a good few times now and loves it, so she is familiar with the place and with the team there. They are well used to her little ways and how she communicates etc. She left on the school bus as normal this morning and won’t be home until tomorrow afternoon.

I know in my heart of hearts she will be fine. Our pixie has always adapted to change well, and while she likes her routine, she can cope with changes. She will be at school today and tomorrow which she adores. But I’m very nervous, I know I am probably projecting, but I keep hoping she settles ok, that she sleeps ok, that she doesn’t get upset and start looking for us.

This is a huge step for us all, for me in learning to let go that little bit more, for our daughter in developing her independence that little bit more and for us as a couple to get used to having free time. We have never had a night away from her together since she was born. I have spent the last couple of days thinking of things to do to keep myself busy. We have been looking for respite care for the last year or so and I know it is a hugely important and good thing. But now that it is really happening……. eeeeek.

I’ll let you know how we all got on.