Have a look at this. Pádraig is taking back control over his life! Picking drinks. Switching off boring programmes on the TV. You should have seen the joy on his face as he started to explore this amazing technology. He picked orange juice – and he got it. It’s that simple and that powerful.

The programme reads out all the choices once. Than, when it reads out the choices a second time, he makes his choice by pressing a switch connected to the Dynavox system, then the it reads out the choice he made again to confirm.

In other news –

If I was a politician, especially the Minister of Health, I’d listen up. Because here is a huge opportunity to do the right thing for families who are now speaking out and to support the An Saol Project. – You wonder what they are waiting for.

Not just myself, but even Taoiseach Enda Kenny TD, have asked the Minister of Health to get in touch. I have requested, several times, a meeting – but sadly there hasn’t been even as much as an acknowledgment so far.

Here are some recent articles about Shane Grogan and An Saol in the Irish Independent and the Irish Mirror, and articles about Amanda Denton and An Saol in today’s Irish Times. – Worth a read.

And I promise you – this is just the beginning. There will be an avalanche of people speaking out, of journalists and the public asking questions, demanding that this injustice and violation of the most basic human rights must stop.

You can help – why not email, ring, or write to your local TDs asking them to support the An Saol Project and ask the Taoiseach and Minister of Health if they could meet with An Saol?

I had never heard about the Hague Conference on Private International Law, the World Organisation for Cross-border Co-operation in Civil and Commercial Matters. They agreed the Convention of 13 January 2000 on the International Protection of Adults which furthers some important objectives of the United Nations Convention on the Rights of Persons with Disabilities, in particular those of Article 12 on equal recognition before the law, and Article 32 on international co-operation.

Boring!

Not really.

Because like many other international conventions, Ireland signed it (in 2008), but never ratified it. It never entered into force.

If it had, a German court order making us legal guardians would be recognised in Ireland.

As you might have heard, the Assisted Decision-Making (Capacity) Act 2015 is supposed to come into force before Christmas. Today, someone who knows about it, said they didn’t believe this at all and, anyhow, who knows if there will be a Government by Christmas?

Pádraig had a visit by some journalists and photographers today and more will be coming over the next week. He agreed to have his picture taken and for us to talk about what is going on (or rather, what is not going on) in order to address what is a national scandal and disgrace.

Today I thought: 90+ year olds are brought, in wheelchairs, from their home to day centres maybe twice a week to play Bingo (whether they want it or not) so that they have some social contact. There is nothing, absolutely nothing comparable for young persons with a brain injury. That’s the way it is, we’re being told. Better get on with it.

Well, this is not it. We won’t get on with it. It won’t remain this way. Because we will not allow this to continue. We will make this a public cause and public representatives will have to act if they want to be taken seriously.

There should be a convention, not on paper, but in our minds and our hearts, agreeing that we afford everybody a life – with or without a severe acquired brain injury.

Who says? Who says that Pádraig can’t take a decision? On his medication. On his bank account. On his treatment. On who to pass his medical information on. Who says? – After all, the man voted in the last general elections!

1

And if someone says that he can’t take a decision, that decisions have to be taken for him – what is that based on?

Maybe he needs some support. Maybe he requires some help. Maybe things have to be explained to him in a certain way. Maybe not everybody understands how Pádraig communicates.

Maybe he requires assistance by a close family member.

But what is the view that he cannot take a decision based on? I am not aware that a formal assessment of his current capacity to take a decision and to understand the implications of that decision has been taken place in Ireland. Yes, such an assessment has been taken place in Germany under the German law and procedures – but none of those are apparently recognised in Ireland…

Pádraig answers complex questions correctly, he shows appropriate emotions, he can tell you which birthday present should be given in his name to a family member. He needs assistance to do all this. But hey – so do many of us. And – after all, the man voted in the last general elections!

Fruit for thought? To think? That this might be more appropriate than applying two lunacy acts from the second half of the 19th century, the 19th century!? And some case law not grounded in legislation at all but developed by judges?

It was a great day today for Pádraig. His new communications device was configured and prepared for his use. Some more work and hands-on experience and he’ll be ready to go. Ready to use it. It might take some time, it might not take any time at all. But no matter how long it will take, this machine will change his life. Imagine what it means to him to take charge of his life again? Of what he is going to wear, what he is going to drink or eat, what music he’ll listen to, which radio station to pick, and which song to play from his playlist!

He’ll take charge of his live. After all, the man voted in the last general elections!

PS: Did a quick re-check on the HSE’s website on Rehab Medicine.

Hurry.

The new Model of Care will deliver, in line with the 2012 (sic!) Neurorehabilitation Strategy, a blueprint for future provision of specialist rehabilitation services in Ireland. (…) Consultation extended until 5:00 p.m. Friday 13th February 2015 (sic!).

I’m looking for the hook into the story: three old geezers, the three amigos, heading off to SanFran. On a bicycle. Would you believe it!? I’ve been thinking about contacting Paddy Powers to see what the odds are on all three of them arriving in Napa. On a bicycle. Who will bail out first? Whose backside will first be raw and bloody and so sore that he won’t be able to walk, never mind ride. On a bicycle. Two of them are granddads – one could well be, given his advanced age.

Who on earth do they think they are? They should be staying at home, cutting the grass or something. Why do they do this???

We had a chef in the house this afternoon, cooking for Pádraig. Cooking ahead. The food is now in the freezer and ready to be taken out whenever needed. Great!

More media interest in An Saol and in what families are having to say about the lack of care for sABI survivors. This is a time bomb for the government. They’d better get on their socks a start doing what’s the right thing to do!

Many people, including myself, have quoted Einstein because we believe he was really smart and really original. One of his famous quotes is his definition of insanity: doing the same thing over and over again and expecting different results.

When I think about my own life, I’m surprised by my level of ‘insanity’. Like trying to convince people who cannot be convinced – instead of working with people who are open to listen.

Surprisingly, Einstein wasn’t as original as I’d always thought. Cicero (remember Cicero?) said in Philippics: Any man is liable to err, only a fool persists in error. In other words, if you are failing to achieve the results you are looking for – don’t be a fool and keep trying because you’ll keep failing. Try doing something else or try to achieve what you want to achieve in a different way. Don’t keep doing the same thing expecting different results (which brings us back to Einstein:).

Government

• Do not keep producing reports
• Do not keep producing strategy papers
• Do not keep organising consultation groups
• Do not keep paying expensive consultants
• Do not publish draft implementation plans
• Do not make promises you know you won’t be able to keep

You have done all that. Try something else. Because if you keep doing the same thing expecting different results people will quote you Einstein’s definition of insanity or, if they have a ‘classic’ education rather than a scientific one, Cicero’s definition of a fool. You don’t want to be seen as either.

Pádraig had a visit today from three good friends he hadn’t seen for some time. They sat out in the garden on what must have been one of the best days of the year. His cousin from Australia who had been visiting over several weeks returned home – but promised him to return soon. It was another day when he stood firmly with both feet in life.

Today we received a letter from the HSE that a German Court Order in relation to guardianship is not enforceable in the Irish Courts according to their legal advisors, meaning that at least until the Assisted Decision-Making (Capacity) Act 2015 comes into force, an act signed by President Higgins in 2015, but not yet signed into law by the Government, the Victorian-era Lunacy Regulation (Ireland) Act 1871 and the Marriage of Lunatics Act 1811 are referred to by case law, leaving decision-making to the health professionals, and giving no rights, for example, to parents of adult children who cannot make informed decisions themselves – in absolute and complete contradiction to the UN Convention of the Rights of Persons with Disabilities (CRPD), also signed but not ratified by Ireland as the one and only EU country (even the EU itself have ratified it). I don’t share that view and would see, if that case ever arose, if that advice was correct – because to me, it doesn’t make any sense whatsoever.

Participation in society happens in public. Which is what makes a republic. But public doesn’t exist per se, it has to be created. Because public can be blind, public can be deaf.

Pictures can create public. Like the one below, perhaps Robert Capa’s most famous photograph, that of a Republican volunteer being killed in the Spanish Civil War in 1936.

80 years on, it is still photographs that create public and capture our imagination.

We are creating public for those with severe acquired brain injury by talking to our families, friends, and neighbours about what we are doing to build a sustainable system of neuro rehabilitation and quality of life. – One day, “our” photograph will capture what our work is all about….

Listened to another song on ‘hair’ today: Almost Cut My Hair by Crosby, Stills, Nash and Young, bringing Aquarian Age ideals into a new era. Apparently, the song tells us how to steer clear of trouble without selling out. I’ll make it my anthem!

Pádraig had a real eventful morning with a specialist from the CRC ‘suggesting’ how he should move forward in terms of communications. All arranged by one of Pádraig’s HSE therapists. What a brilliant move! The conversation was such an eye-opener. Things that when I heard  them were so obvious that I couldn’t understand why I hadn’t thought about them myself before! There is a perspective here of working with Pádraig for months to come. Wonder-ful.

I like Sundays. There’s always a nice breakfast. Pádraig can take it easy in the morning. He has a shower and relaxed breakfast. Today he went out to Donabate to the beach while I struggled ‘running’ my 20k (as per my ‘plan’) along the coast towards Howth, not quite sure whether I was getting ready for the Dublin Marathon or the An Saol Fundraising Cycle from Hollywood to Napa in October.

Whatever I was trying to get ready for it became pretty clear that I do have a long way to go to get ready for any serious long distance activity – be it cycling or running. But I’m not giving up.

You know this feeling when you hear a song you used to listen to until it came out of your ears? And you didn’t hear it for years (decades if you’re old enough) because it’s not one of these golden oldies or classic Stairway-to-Heaven rock songs that Radio Nova is playing.

And because you haven’t heard it for such a long time. And because life has changed so much in the meantime. The song has taken on a whole new different meaning than it had for you before. And there you are: listening to this really old song returning long lost and forgotten memories to you but hitting you right in your heart. Because it says all the things you wanted to shout into people’s faces for a long time, but hadn’t found the words?

That happened to me today when for whatever strange reason or coincidence I listened to I got life from the 1967 musical Hair. Watch it and listen to the lyrics.

I got life, mother
I got laughs, sister
I got freedom, brother
I got good times, man
I got crazy ways, daughter
I got million-dollar charm, cousin
I got headaches and toothaches
And bad times too
Like you
I got my hair
I got my head
I got my brains
I got my ears
I got my eyes
I got my nose
I got my mouth
I got my teeth
I got my tongue
I got my chin
I got my neck
I got my tits
I got my heart
I got my soul
I got my back
I got my ass
I got my arms
I got my hands
I got my fingers
Got my legs
I got my feet
I got my toes
I got my liver
Got my blood
I got my guts (I got my guts)
I got my muscles (muscles)
I got life (life)
Life (life)
Life (life)
LIFE!

It made me want to watch the whole musical again….

What an extraordinary day! What a extraordinary people!

The day ended with an out-of-this-world birthday party for Ruth this evening – who had asked her guests not to give her presents but donate what they would have given her to An Saol. She then invited me to talk to her family and friends at the party tonight, just before the meal was served. The reaction was almost overwhelming.

The day began with a drive to Longford, together with a new friend of An Saol, meeting the huge Longford group all ready to head off for Croagh Patrick – with a brilliant breakfast stop at “Into the West”.

At the bottom of the mountain, we met David and Joe – two absolutely inspiring men.

With such a broad support the An Saol cannot but succeed. Wouldn’t you agree?

Before you read this, remember it’s from 1967 – the language is really cool, not always PC, but never meant to be offensive. So, here it goes: You can get everything you want…

And walk out. You know, if one person, just one person does it they may think he’s really sick and they won’t take him. And if two people, two people do it, in harmony, they may think they’re both faggots and they won’t take either of them. And three people do it, three, can you imagine, three people walking in singin’ a bar of Alice’s Restaurant and walking out. They may think it’s an organization. And can you, can you imagine fifty people a day, I said fifty people a day walking in singin’ a bar of Alice’s Restaurant and walking out. And friends they may think it’s a movement.

I’m sure that I did mention the song Alice’s Restaurant before. It’s one of my favourite songs and it doesn’t make it onto the radio very often because it’s really long, like: really long. It’s by Woody Guthrie’s son Arlo. It’s also a film. An absolute classic, like Easy Rider, Once Upon a Time in the West, Harold and Maude, Into the Wild…

Arlo in his wisdom describes in the song word for word what is now happening.

Family by family “walk out” their sons (it is mostly sons) from nursing homes.

Family by family are reminding their elected representatives and their government that their children have a right not just to health care but a right to a life with dignity and respect.

Family after family are reclaiming their children’s right to health care and to their human rights.

It’s no longer just one person. It’s no longer something that can be put aside as something strange, unusual, “off”.

There are so many families now that we are really an “organisation” – and will soon be seen as a movement. Because that is what we are. An Saol is a movement that will change the lives of the injured, it will change the hearts and minds of health professionals, as well as that of society.

Join the movement. Do what you can to support us.

And: wish us luck with the climb up that “hill” in Co. Mayo tomorrow. And: wish Ruth a great birthday party tomorrow evening – she asked her friend to support the An Saol Project, rather than giving her presents.

All of a sudden, so many things are beginning to happen that I feel: Dizzy. So dizzy my head is spinning…

More families are bringing their sons home. More families are beginning to speak out. See the Irish Independent and the Irish Mirror.

We had contact with two other families ready to support An Saol. It looks like the Irish Times and, hopefully, RTÉ will be picking up on the enormous contribution the An Saol Project will make to claim the human rights of those who are offered end of life treatment when they have their lives ahead of them.

We will rock the boat.

There is a dynamic beginning to develop that will not stop until real change and justice is delivered to those who survived a severe brain injury.

Pádraig continues to get much better control of his body and is showing tremendous alertness. He is continuing to make such big efforts to get better, to regain as much control over his body, his mind, and his environment as possible. He, and others, need our support to succeed. And succeed they will. Together, we will overcome the current mind sets. Together we will change the hearts and minds of people who cannot look beyond the horizon – and will “never” get dizzy!

I will go and climb Croagh Patrick with a group of friends from Longford this coming Saturday. Let me know if you want a lift to basecamp and we meet up.