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Waiting for 10 years – ratify the UNCRPD now!

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?

#GE2016 part three: Why we have to Disable Inequality

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.

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

 

The A-Z of me

A couple of weeks ago some of the very talented writers in the Irish Parenting Bloggers group started writing A-Z’s about themselves.  As ever, I’m a bit late to the party, but was tagged by Clare who writes at The Clevs to add mine, so here goes!

A  One of the things that infuriates me is apathy.  I really can’t get my head around the mindset of people who have no interest in what’s happening in the world, or who just sit around and whine things are bad but do nothing about it.  Drives me demented.

B All I want in life isBooks. Well there was never going to be anything else for B really was there?  I have everything in this list except not enough of 5 and 11 and will always need more 12’s.

Chocolate, crisps and cake, three of my biggest weaknesses when it comes to snacking.  I’ve never tried to make crisps or chocolate, but love to make cake……. These were my first attempt at hot cross buns (before baking)DSCF3332

D  Dandy Walker Syndrome, the rare neurological condition our beautiful daughter was born with nearly eight years ago.  Becoming a parent for the first time changes your life in ways you could never have imagined, but this diagnosis (which came prenatally) took our lives in a direction we never knew existed.

E  I love elephants, no idea where this came from or why but I just love them.

F    I can’t remember when I first heard the word feminism or discovered what it meant (and then went on to discover how it has many different interpretations) but I vividly remember the first time it was used in a derogatory sense towards me. Yes it was the classic “You must be a bra-burning feminist then” when I expressed an opinion aged 15 in the school library that I didn’t think it necessary for women to change their surname upon marriage.  F is also for Fionnuala, my amazing and adored daughter.

G  On a good day (and today is dry at least!) I can easily spend an hour just sitting in the garden listening to birds and daydreaming.  A great way to switch off.

H  my truly wonderful husband. Falling in love with him changed my life in ways I could never have imagined, and has enriched it immeasurably. And following on from F above, I didn’t take his name when we married. As he put it so well when talking to another person “She has a perfectly good name of her own.”

I  Imagination  – mine is always on the go.  Sometimes it would be nice to turn it off for a little while.

J  Growing our own fruit and veg has made me come up with ways to preserve our bounty.  Jam is something I made rather a lot of last year – gooseberry, gooseberry & elderflower, blueberry, marrow & orange, marrow & ginger, blackberry & apple (ok that was jelly).  I haven’t entirely got the hang of it yet but there’s a nice feeling in seeing the jars all full and neatly labelled.

K  One of my forms of therapy is knitting.  I don’t claim to be very good at it and I’m not terribly fast, but I enjoy it and it helps me to relax and unwind.  Apart from when a pattern goes wrong and I curse it to the pit of hell.

L   Liverpool, a city very dear to me and the football team I’ve supported since I was 6 years old. The latter fact played a small part in my choices for university applications and I’ve never regretted going there as a very nervous fresher 23 years ago.  Great city, great people.  I ended up staying for 10 years.

Money.  Like many people I spend a certain amount of time having to think about money and usually how to make it go further.  I’m not however motivated by it and have zero desire to accumulate a lot of it.  Once I have enough to meet my living expenses I’m not bothered about having more.  Here’s another mindset I can’t understand: people who have made more money than they could spend in 20 lifetimes yet they carry on making more.  WHY???? A certain wealthy businessman who lives in Malta comes to mind here.

N Current affairs, politics, news, I’m a news junkie.  Two daily newspapers, the news/current affairs radio programmes, never miss at least one evening news show on TV.

O   I hold very strong opinions on a lot of topics and am not afraid to express them.  Sometimes this annoys people. See F above.  However, I maintain – well I would wouldn’t I ? – that my opinions are as valid as anyone else’s.  And hopefully better thought out than some.  I am working hard on listening better to other people’s opinions too.

P  powerPower. I had some fascinating discussions and arguments about power and its meaning, use and abuse while studying community development last year.  Still pondering this one through but I think its something we hand over way too easily.  And see A above.  

Q  As a child I asked questions constantly.  Why this? Why that?  Why does…. ? why doesn’t…….?  I keep questioning, always will.

R  A rose by any other name would smell as sweet apparently.  They are my favourite flower, apart from yellow ones.  They don’t feel or look right to me.

  Being by the sea is one of my favourite places.  It doesn’t matter which sea or where I’m near it.  But I wouldn’t want to live on the coast  – I like to keep it as somewhere to go for a treat and to relax.

T  I was never that keen on or interested in gardening as a child and teenager (probably not that unusual) but developed an interest in growing food around the time I really learnt to cook.  This would be 20 odd years ago now.  Over the years this has deepened and now we grow some fruit, some veg and herbs.  So why is this not under G for garden or F for food?  Cos deep down I really want to be Barbara from The Good Life!! Love the idea of self-sufficiency and hope to make more moves in this direction.  The Good Life

U University.  Sometimes I feel I didn’t make enough of my time at university.  Don’t be too surprised if I end up at one again in the not too distant future!

V  Vino. Red for preference.  There is something incredibly relaxing for me about sipping a glass of good red on a Friday evening.  A good way to start the weekend!

W  Walking.   I have started to walk between 4 and 5kms every day, don’t hugely enjoy it (I could be at home reading a book!!!) but I can feel the benefits so will persevere!

X  Xenophobia – the fear or hatred of foreigners or strangers or their politics or culture.  That is the definition from the online Collins English Dictionary.  I cannot, and never could, understand prejudice.  Its the most frightening mindset out there and I do my best to challenge it when I hear it.

Y  I’ve only done Yoga a few times, but every time I have loved it and found it a great stress reliever.  I would love to incorporate it into my weekly routine somehow.

Zzzzzzzzzzzzzzzzzz  I love my sleep and I love my bed!  Curling up in there with a good book is a great pleasure.

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!!!

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.

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.

Get Pixie Pedalling – an update

Last August I wrote about a fundraising appeal to purchase a wheelchair tandem bike so that my daughter could go on bike rides with her daddy. You can read about that here

Well, the outcome of that crazy event was that the team from Virginia Triathlon and Cycling Club WON the four-man category in the Race Around Ireland!!!! Yes they won!!!! After cycling from 3pm Sunday until just after 10pm the following Wednesday without stopping – yes day and night – and covering nearly 2200km around Ireland they only went and bloody well won!!!

By the time the team and their hugely important support crew got back to Navan we were all in a state of delirium. I had hardly slept, had totally neglected the housework (ok that wasn’t a hard one for me) and my main achievement every day had been getting our daughter up and out to school. Most of the rest of the time I was glued to my laptop where we could follow the race in real time. Now this wasn’t – obviously – camera footage, this was a tracker with a little black dot for each entrant in the race which enabled us to see exactly where the lads were and more importantly to see if their close rivals were nearby. At times it was practically neck and neck and I think I can safely speak for everyone else involved who was watching from home that the tension was almost unbearable at times. My husband was one of the support crew and we occasionally managed to have brief phone conversations which gave me some idea of what it was really like out there.

There are many many stories that could be told about Team Pixie’s Race Around Ireland. Some of them are probably not suitable to be told here! I am sure that everyone else who was involved in whatever way will never forget that mad crazy week in September when our world shrank to a little dot on a computer screen and mad texts at 3am asking where the lads were and how was it going. For us as parents it was the most incredible time. We are still so touched by the kindness and generosity of people to do something for our little girl.

The fundraising appeal was a huge success and the bike has been ordered and will hopefully be with us very very soon. I know that getting the bike was the main focus for the team and all the club but we are thrilled to learn that the four guys – Johnny, Jimmy, Lorne and Matt – have been nominated as contenders in the Anglo Celt sports awards!! We would love to see them get the recognition they so richly deserve and if you think so too, maybe you’d text Cavan 9 to 57199 (Republic of Ireland only). If they are the overall winners on Jan 30th it would just be the crowning moment on an incredible experience.

Person First Language

Its a term many of you won’t have heard of before. Quite simply it means referring to a person not by a medical condition or a disability they might have, but rather by their name. I’m sure most of you (especially of my vintage!) will have heard terms like ‘that Down’s kid’ or even worse ‘that Mongol kid’ to describe a person who has Down’s Syndrome. Its about putting the person first – about seeing the person not the disability. This might sound obvious to us in the supposedly enlightened, liberal, accepting 21st century, but trust me this kind of labelling still happens. A lot.

When our daughter was diagnosed prenatally with Dandy Walker Syndrome, we embarked on a steep learning curve. We’re still on it and probably always will be, although its not as steep any more. But we are still on occasion brought up short by attitudes towards people who have disabilities. When she was just six weeks old, I brought her for the BCG vaccine, and while waiting in the reception area of the clinic I was shocked and a little hurt to hear one nurse refer to my child as ‘the Dandy Walker baby’ when speaking to another nurse. Bear in mind I was only six weeks after giving birth and my hormones were all over the shop so it took very little to upset me but this really shocked me. When we went in for the vaccination, I mentioned this and just said that “you know she has a name, she’s not the Dandy Walker baby”. It was kind of brushed off with the comment that “its such a rare condition [true] and we see so few babies with it [true]” None of that is good enough reason to label my child. Fionnuala is Fionnuala. She has Dandy Walker Syndrome, she is not Dandy Walker Syndrome. You can find out more about this via Lose the Label which is all over social media

You never hear “that asthma kid” or “that cancer bloke”. We seem to understand that a person who has asthma or a person who cancer is so much more than their respective medical conditions. (And I just want to point out that I am not belittling either asthma or cancer here) But many people still think its ok to describe a person who has a disability by that disability. Its not. Fionnuala, my daughter, is funny, can be very cheeky in a cute way, is very affectionate, has a hot temper, loves school and books, adores music and her current favourite food is carrot cake. THAT’S who Fionnuala IS. Dandy Walker Syndrome is what she HAS. Person First Language. Remember it. Use it.

Every little thing she does is magic…..

So carrying on from yesterday’s post about the #100HappyDays project, the thing that made me happy today was reading my daughter’s communication book from school. We rely on this to find out what she did at school each day, what went well or not so well and what kind of mood she was in. Her teacher is great at sharing news with us. Fionnuala's communication book
Fionnuala is not able to tell us what happened at school each day, although she is coming out with new words all the time and her communication is really coming on well. Actually she is doing great overall. Her motor skills (both fine and gross), her mobility, her speech, her understanding, everything. We had no idea how her developmental journey would pan out and while she has global developmental delay (that means she is delayed in every area of her development) and is probably like a neurotypical 2 year old in a lot of ways, we often forget that. She is just our amazing Fionnuala, developing at her own little pace in her own little way.

At times its hard to focus on the good stuff, my experience of motherhood has been radically different from what I had expected and I’d be lying if I said I don’t find it hard sometimes when I see all the things children far younger than Fionnuala can do that she can’t. But I do try to learn from her everyday. She is a genuinely happy little girl, very loving, very affectionate and at times quite a wee monkey too! She is feisty and determined and never gives up. I could learn a lot from her, I just need to remember to do so.

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