Parenting · Politics · Special Needs

As a carer I hate

A month ago I was having an especially bad day and in a need to vent but with a thousand other things all demanding my attention and/or headspace at the time, I couldn’t sit down at my laptop to let it all out. So I tweeted a list of things that were in my mind at the time, one after the other, it took me maybe 20 minutes. The lovely Candi over at oftencalledcathy put them together in a meme for me and encouraged me to elaborate so here goes.

Being told by well-meaning people to ask for better services (like just asking will make them appear)
An example of this, from my experience, is “why don’t you just ask for more respite?” Gee, that has never occurred to me before! Never mind the fact that so many services are stretched to breaking point. Never mind the fact that our respite service caters for over 70 families and is not open 365 days a year and tries to group the children attending together in terms of age and ability. Add to that the fact that they cannot have too many wheelchair users at the same time (fire regulations etc.) and our daughter is a wheelchair user. Also, I know many of the other families who use the service and I know how desperately they need a break too. But hey, yeah sure I’ll ask. This kind of comment doesn’t help.

Being asked why I get Carer’s Allowance when “you’d be at home minding the child anyway”
Oh where to even begin with this one which I’ve had aimed at me online many times. Caring for a child with disabilities is so much more than just ‘minding the child’. Its doing physio, speech & language therapy, occupational therapy, attending numerous appointments, administering medications, dressing, feeding , toileting a child who cannot do this for herself yet but is way older and bigger than most children who need that kind of help. Actually, I’m not going to dignify this one with a response any more. Jog on.

That it makes me financially dependent on my spouse
I’m struggling to find the words to describe how this makes me feel. Its not a bone of contention between us, but its not a position I ever wanted or intended to find myself in.

Being referred to as brave or selfless or a hero. Meaningless platitudes or to put it another way, bullshit
I know that one’s going to annoy some of you. Well, just stop and think why you might say that to a person like me. Is it going to help them in their caring role? No. Will it make them feel better? For some, maybe. It doesn’t for me. Does it make YOU feel better when faced with a scenario/life that you could never envisage or imagine having to live? Ah now maybe we are getting somewhere. You see, and again this is just my opinion, none of us family carers chose this role. That doesn’t make me a hero. I have no choice but to do this. But by telling yourself and me that I or others like me are brave, does it make you feel a little bit better that you’ve said something nice and encouraging to the carer? If you really want to make me feel better or cope better do something practical. Or something political. Keep reading.

Not being taken seriously by the State
If we and the work we do as family carers were taken seriously by the State we’d be better paid (see next point) and we wouldn’t be expected to work in the conditions we work in. We’d get full pension rights (another thing that causes me stress about my financial dependency), and automatic medical cards. No, carers don’t automatically get them, so anytime I need to see my GP its €40. There have been times when I’ve not gone to the GP although I probably should have.

If all the family carers in the State went on strike the country would collapse. If we all stopped doing what we do, the caring, the feeding, the lifting, the administering of medication, the physio, the therapies, the researching of new equipment and ideas to help your child achieve their fullest potential, the lobbying of politicians and State bodies, the toileting and all the other things we do and left our loved ones at A&E’s, respite centres and schools around the State, then our over-stretched services would disintegrate completely. But we won’t of course because we love our children and those we care for. And I really mean that, we do love them with every fibre of our beings. The State knows that and it knows we will never down tools and this allows it to abdicate their duty of care to its citizens.

That the Carer’s Allowance is means tested. I get €66 per week or just over 39c per hour
Being a family carer is not a 9-5 job. Its 365 24/7, because even when she is at school or in respite or asleep, I’m on call. I’m trying to make our house more suitable for her to live in as she gets bigger (and we get older). I’m reading up on different medications and therapies, and wondering if they will work better for her. I’m attending workshops and information sessions on various disability issues. And for all of this I get 39c per hour. Its means tested which means that my husband’s income is assessed as are our outgoings. You sometimes hear politicians defending the rate of Carer’s Allowance and pointing out that its €209 per week. Yes it is, IF you get the top rate but many of us don’t yet we do the same work. Is this an equal pay issue I wonder? There are also a large number of family carers who – because of the means test – do not receive ANY Carer’s Allowance. How is this ok? (If you’ve spotted a difference between the amount I get and the amount on the meme above, we got a €5 per week pay raise last month after the meme was made.)

Feeling that I have to justify myself and the work I do. And it IS work, done out of love yes, but still work
And I’ve just realised that this blog post is doing just that……

That we carers have to share our private family lives on national media to get help
I’ve done this a bit myself, not in any great detail. But how is it ok that the mum of a profoundly disabled child had to go on TV last month and talk in quite intimate detail about the realities of caring for her son in order that she can raise the issue of home support services? I watched it out of solidarity and was interested to see the amount of people on Twitter saying how terrible it was (yes, it is) and how sorry they felt for her. But I didn’t see anyone questioning was it ok that she had to go on national TV and say this stuff. What does this say about our society that we don’t have a problem with people being almost forced to forgo all sense of privacy and dignity in order to fight for services? I don’t have the answers, but it makes me really uncomfortable.

That I have to worry NOW about services for my daughter when she becomes an adult which is not for over 8 years
She will be 10 this summer and I’ve attended a few workshops and information sessions on adult services over the last year or so. I didn’t really think anything of it until a friend asked me what was this next meeting about and I explained it was about adult day services for people with intellectual disabilities in Meath (where we live). She looked at me with a mixture of shock and disbelief and said “why are you going to that when she’s only 9?” And you know what, that really hit home. Over the last ten years I’d gotten so used to having to research and investigate what services are out there that I no longer gave it a second thought. But I should not have to be thinking about this now, I should be enjoying her childhood, secure in the knowledge that there will be appropriate day services and respite services available for her when she leaves school. In 2025. But I’m not and that’s why I have to go to these meetings now so I can prepare myself.

That its very difficult for us to get out & march yet very few march with us
Its great to see people marching in huge numbers for issues that matter. Its heartening and reassures me that in this new post-Brexit, Trumperica dystopia we seem to be falling into that so many people still get riled up. But please, if you are reading this post or seeing things on TV or in papers about disability rights and carers’ rights, please join us next time. And ask your elected representatives why there aren’t enough respite homes or adult day services, or why carers get such an insulting amount of money …….. the list is endless. Because disability is not necessarily something a person is born with. People acquire disabilities every day. The 2011 census showed that 13% of the population of the State were living with a disability. That’s over half a million people. There are about 4.5 million people in this State, so the chances are you know someone with a disability or at least one of their close family members. Just think about that the next time you see something about disability online or on TV and you cluck your tongue and say “ah that’s terrible”. Next time, do something about it.

Advice lists of the things I should do to look after myself yet no one considers lack of time or money to do them
I’ve been tagged in loads of these. Generally the advice is to exercise more, eat better, make time to meditate or similar, develop interests and hobbies outside your caring role, make sure to spend quality time with your partner and have time with your friends. These all require time, in some cases money, and a support network. Not all carers have those.

Watching other carers in crisis and feeling so completely powerless to help
Its heartbreaking. And its frightening because I can never shake off the feeling that one day it could be me.

That I get no training in manual handling yet am allowed/expected to do untold irreparable damage to myself every day
That seems to surprise an awful lot of people, well in my acquaintance anyway. “What, you mean you’ve never had any training?” Training? Training on how to lift my daughter who has disabilities? No. Training on how to lift and manage her physical needs so I don’t hurt my back? Nope. So, no, as far as I can make out, family carers like me don’t get any training in how to care for our loved ones. Just think about that for a minute. My daughter will be ten years old in a few months. She is very slight for her age but has long legs (inherited from her Daddy). I’m 5ft 2in and carrying a few extra stone yet I am allowed, expected even, to lift and manoeuvre her in such a way that means I am doing untold and irreparable damage to my back and joints. In her school and respite service she attends, both of which she adores, there is absolutely no way this would ever happen. No way would one member of staff be allowed or expected to lift her in this manner, both for health and safety and child protection reasons. Yet I’m expected to.

The mental strain of it all. I don’t like the person I am at times
I’ve always been hot-tempered, fond of an argument and unafraid to voice my opinions. But I’m increasingly becoming less tolerant of bullshit and timewasters and I’m snappy at those I love. I’m mentally tired most of the time and that takes a physical toll too.

That I’m expected by some people to accept this is all part of some deity’s plan. Really?

If you want to believe that some deity made a decision to damage my beautiful little girl’s brain in order to meet some part of a bigger plan that’s up to you. I don’t believe that and I find the concept of a deity that would do that frankly quite terrifying. And for anyone reading this who doesn’t accept that some people think that, just ask yourself what other interpretation we can put on the words “ah sure he knows what he’s doing.” Or “everything happens for a reason.” I can’t see a reason why any supreme being would damage the brain of the most wonderful precious little girl ever. And if you think you know a reason why, keep it to yourself please. Your belief system is not mine and just because my daughter has disabilities, that does not entitle you to push them onto us.

That when we get respite some people tell us to go away for a few days when sometimes we just need to rest
“You should go away for a few days, put your feet up.” We’d LOVE to, sometimes. But that costs money and energy. (Booking, packing, travelling) Respite is more usually on weeknights and my husband has to go to work the next day so its not really an option. And sometimes we just want to chill in our own home, or catch up with some DIY or gardening or other stuff. So please, lose the slightly disapproving look and the “but you should be doing xyz” its our time, let us spend it how we choose.

That my child’s school is 26 miles away so even in an emergency its 45 mins to get there adding to stress
Just imagine you’ve had a call from the school, your child is ill/had an accident and they need you there ASAP. Your stress levels soar, its part of being a parent. Then imagine you have to drive three-quarters of an hour (because with the traffic that’s what it takes) until you see for yourself. Most parents thankfully don’t have to face this, but if your child attends a special school there’s a good chance your child (who can have really quite high care needs and in some cases can be medically fragile) will be that far away from you for a few hours each day. Just think about that would make you feel.

That I rely too heavily on food to cope even though I know it just exacerbates things
Caitlin Moran called overeating ‘the addiction choice of carers’, I think she’s on to something. When life is this stressful, anything that gives momentary pleasure or relief is irresistible. Food is so easy to use as it enables us to carry on with everyday life, in a way that severe addiction to drugs or alcohol can’t. And knowing that its making me feel worse doesn’t mean I can easily stop.

The knowledge that this will only stop when I die or if my child predeceases me. Knowing there’s no end to this
I can’t add anything to this. Its overwhelming so I try not to think about this.

That I can so easily type this out without having to think too hard
Its probably only the tip of the iceberg….

Advertisements
Parenting · Politics · Special Needs

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?

Feminism · Politics

5 ways to bring about change, with respect to Michael Moore

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 taoiseach@taoiseach.government.ie, 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: latelate@rte.ie Twitter: @RTELateLateShow

Politics

Honour her memory

“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.

2016 Reading Challenge · Books · Politics

2016 Reading Challenge – Book Four

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's Last Stand

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.

2016 Reading Challenge · Books

2016 Reading Challenge book two – Finished!

My second book for the Modern Mrs Darcy Reading Challenge was From Beirut to Jerusalem by Swee Chai Ang. From Beirut to Jerusalem 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.

General Election 2016 · Politics

#GE2016 part four: Election Day – shaping the new Government?

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.

General Election 2016 · Parenting · Special Needs

#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.

Politics

Something happened in Ireland yesterday

Yesterday was 22nd May, we had a referendum, well two actually. One on lowering the age at which a person can stand for election as President and the other on marriage equality – allowing same sex couples to have civil marriage.

I’m writing this in a hurry as I’m heading to Dublin in a short while to attend the Countess Markievicz summer school, which is on women and equality. Its always a good day and I’m looking forward to it.

I always vote and take pride in so doing but I was never prouder to vote than yesterday. Even in my small rural town in north Meath there was a sense amongst some of us anyway that something was happening. People were talking about marriage equality in the supermarket, Yes Equality badges could be seen all over the place. It felt good, really good.

Then I started looking at social media and got very emotional, the #hometovote stories made me well up, just the sight of so many people coming home to vote because this issue meant so much to them. As the day went on and it became apparent that turnout was good, possibly even high by referendum standards, I felt a rising sense of excitement. Now I’m a news and politics junkie and watch election results come in but never feeling like this.

Then on Twitter yesterday evening seeing Des Bishop ferrying people around Dublin so they could get to vote, and seeing others all around the country doing the same, well it just gave me goosebumps. Taxi firms waiting to collect people at train and bus stations and taking them to the polls for free (ok yes marketing ploy maybe but it felt good!), watching to see would twitter user @KDamo get home to vote (he did) all of this combined to make me feel that something happened here yesterday. Something good, something positive. A step towards equality for all.

And that’s what I hope the most. That the marriage referendum will be passed and that the energies that have arisen around this are then used in all the other equality struggles in our country. But that is for another day. For today I will wait and watch and hope that its a YES, and even better a resounding YES.

Its a new dawn, its a new day, its a new life……… and hopefully we’ll continue to feel good!

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.