What a glorious day it was! Summer in Dublin! The Liffey didn’t stink like hell (yet), it’s not warm enough:) But the blue sky and gorgeous sea attracted big crowds to the beaches.

Pádraig went out to Donabate and really enjoyed the day!

We’re starting to plan next week’s walk on the Kerry Camino (never too late to start planning:) and I’m looking at the forecast every five minutes – as if that would get us better weather!

Also decided on a slightly different timetable for Pádraig in the mornings. We’ll spend just a little less time with the PAs and stretches and more on using the Tobii Dynavox, on talking, on doing quizzes, on ‘researching’ the news, music, films, books. It’s never just about physical, but also about mental exercise! I’m sure it’ll be beneficial for myself too:)

We had another lovely afternoon in Odin’s Wood today with loads of friends coming up to join us for the An Saol Café. It’s what the Germans would call a ‘Geheimtip’, a real insider place, for having the most excellent and widest selection of cakes and buns, together with all sorts of teas and coffees. Together with the best company you could wish for.

Last week, we used Pádraig’s standing frame for a few times. And he managed to do something he had not managed before. Standing up tall, with his arms rested on a giant blow-up peanut, he held his head up high, all by himself, for a few seconds.

Another first.

Yesterday, I also heard, for the first time in weeks, from the HSE again. We’re going to have a meeting, at a date to be confirmed, to finalise the agreement on the implementation of the An Saol Project.

Once that’s signed, we’ll be able to start working. – It’ll be another first.

I am not in despair (though I’m close to it at times:). It’s getting better. All the time.

Very many people (most?) are cynical when it comes to politicians. Not without a reason. I have asked myself many times, how they can go to bed at night and sleep. If they are the ones in charge, they are the ones who can introduce change.

Today, I want to share a letter I received from Taoiseach (Prime Minister for the non-Irish:) Enda Kenny, T.D., with you. A letter he did not really have to write, but which he wrote anyways. And I must confess that I found this short, to the point letter deeply encouraging, showing a degree of understanding and compassion I really appreciate. – And if he is reading this blog: Taoiseach, I sincerely thank you for your letter and words of encouragement.

We are making progress, however slow it is:) And that is thanks to all of you, including the Taoiseach, to all who have been supporting our work, who are not prepared to allow the scandal of the abandonment of survivors of sABI to continue.

Every day that passes without change being introduced is a day lost for Pádraig and others like him. It’s a day lost for me as well. For the first time in my life I am aware that I’m not going to live forever. (I’m a slow learner.) Which is why it would be nice if we could speed the implementation of the An Saol project up. Just a little:)

We will be continuing with our Saturday meetings this Saturday

10 years ago today, the Irish Government proudly signed the UN Convention on the Rights of Persons with Disabilities (CRPD). Over these ten years, Ireland became the last country in the EU and one of the few countries left in the UN yet to ratify the CRPD.

So there was a call to protest in front of the Irish Parliament, Dáil Éireann, in Dublin to let the Irish parliamentarians know loud and clearly that we want them to ratify the CRPD now. There was a really good turnout and the speeches delivered by so many representatives of so many different groups representing so many different disabilities were brilliant.

There were ‘corporate’ statements and there were accounts from the every day frontline of living a life with a disability. It was one of the most powerful demonstrations I have attended, it was also the most heartbreaking. The people were not talking about something abstract. They were claiming their right to a live with dignity and respect. As equals. With equal rights. Like the 64-year old twins shouting out their frustration at a health service that offered pads rather than personal assistants who could help them going to the toilet. – It is nothing short of disgraceful.

And one other aspect I found hard to believe: this highly successful event, broadcast from all Irish media stations today, was organised by one single person and her friend – not by the highly State-funded disability federations and representative bodies.

One single person with no limbs who doesn’t know limits: the truly amazing Joanne O’Riordan @NoLimbsNoLimits

When does something become a right, not a nice gesture, an empty promise, a position paper, a task force topic, a strategy, or a well-meant but never acted on implementation plan?

When it is recognised as a right, enforceable by law.

It’s that easy.

To date, Ireland is the only EU country and one of the few countries in the UN, that has not ratified yet, 10 years after signing it, the UN Convention on the Rights of Persons with Diabilities (CRPD.

Tomorrow at 11am, in front of Dáil Éireann, there will be a protest, reminding our public representatives of the urgency of the ratification of this convention – and on the necessity to recognise the rights of persons with disabilities not just in the health system, not just in society, but in the legal framework of the State.

Isn’t it remarkable that it took a single person, the marvellous Joanne O’Riordan, to organise this protest? I think it is. And it should put to shame all the large, heavily funded, well-supported disability organisations to shame.

When you mention that name, “Arthur”, in Ireland, everybody thinks of the person who invented the black stuff that really made the country (apart from St. Patrick and Shamrocks in a bowl in the White House).

If you’re into philosophy, and more specifically, if you are into German philosophy, you might think of another person. The one who left Kant behind and became, in the first half of the 19th century, a well-know representative of ‘philosophical pessimism’.

Why would all that be of interest at all at all?

Well, Schopenhauer had really great insights into the world and captured them in bite-sized quotes. Like this one:

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.

In his ‘pessimism’ he gives hope to those who have the stamina and perseverance not to give up when they’re ridiculed. Those who are able to withstand violent opposition to the truth they believe in. Because, in the end, their truth will be accepted as self-evident. – To me, it sounds like a chapter from the Dreamboater’s survival handbook.

Schopenhauer also said: Compassion is the basis of morality.

I’ve got some news from across the big pond. Having contacted the Attorney General’s Office of the Commonwealth of Massachusetts for the first time about two years ago, as some of you might remember – in fact, some of you contacted that Office yourself -, having sent reminders and having visited the Office last June (yes, I realise this is a rather long introduction to what is about to come, but please hang in there), I received a phone call from their Chief of the Criminal Bureau who told me that having studied the case closely she found that the investigation into the accident was not biased and that the decision of the Brewster Police Department not to prosecute or even cite the driver of the truck that hit Pádraig was – the correct one!!!

There are official Massachusetts court instructions on OPERATING NEGLIGENTLY SO AS TO ENDANGER. In those, I found several reasons why, in a general case, someone who, undisputedly, attempts to overtake a cyclist on a narrow country road, with indications that he might have broken the speed limit, with an oncoming car on a direct collision course, not keeping the cyclist in sight all the time, might act with negligence, i.e. that he might fail to use “due care”, not “acting in a way a reasonable person would act”, doing what a “reasonable person would not do under these circumstances”. (Found in: http://www.mass.gov/courts/docs/courts-and-judges/courts/district-court/jury-instructions-criminal/5240-operating-negligently.pdf) Obviously, and with good reason, I am sure, the Attorney General’s Office did not see it that way in the specific case of Pádraig’s accident. Supporting, instead, the view of the Brewster Police Department who issued a press statement within hours of the accident pre-empting the results of their own investigation still to be conducted, putting the full blame of what happened squarely on Pádraig himself.

I am not a lawyer and, of course, do neither have the background nor the expertise of the Attorney General’s Office, but in my mind, and generally speaking, if you overtake a bicycle on a narrow country road (with a well-known history of it being a traffic black spot), with oncoming traffic on a direct collision course with you, with speed, one of two things is going to happen: you either crash into the approaching car (and get badly hurt yourself) or you hit the unprotected and (to your truck) non-threatening cyclist. (It is ironic to read the police report on Pádraig’s accident where not the vehicle on a direct collision course with the truck, but Pádraig on his bicycle, is labelled as a ‘threat’ to the truck.) So in my mind, and I admit that I might, in my innocence, and because of my lack of legal expertise, be completely wrong, in my mind, a reasonable person would not choose to overtake a bicycle at that point, but would slow down instead – which is, by the way, what the driver of that truck later said he will do in the future.

Tragically, too late for Pádraig.

Bray on Mother’s Day was packed. Bray on Mother’s Day was difficult to get in to. Bray on Mother’s Day was almost impossible to get out of. Bray on Mother’s Day was gorgeous sunshine, full of people, full of life, endless queue at the chipper, kids throwing stones on the beach, insane people going for a swim fully dressed, an overcrowded playground, kids shouting, adults arguing, everybody having a good time (that’s what they came for), everybody enjoying life – whether they were aware of it or not.

Pádraig went for a walk along the promenade with us, with a friend of ours, our oldest common and best friend we see far too seldom, a friend he had welcomed earlier on in our house with the broadest of smiles.

Back home in the evening, he had his second take-away after the accident, but for the first time helped by one of his best friends. Just before dinner, the two had a bit of a conversation and a laugh about school and the common memories they share about it.

Later we sat around the table and all agreed about what a wonderful paella I had cooked before we parted and are now making our way to bed.

It was a day when we all (at least I think it was all of us, maybe in different ways) enjoyed life in the face of terrible tragedies. I was more aware than ever before of how lucky we are to have days like these in company.

It was a good Mother’s Day. It was a celebration of life in the face of tragedy and death.

You see, a ladder can be used for many different things. As can the battery for Pádraig’s wheelchair ‘motor’: that is the little but very heavy blue bag strapped to the ladder to pull it away from Pádraig.

What is Pádraig doing here? And what is so amazing about it!?

Well, first of all, he is simply doing something that he has never done before: he is holding the tilted ladder that is trying to ‘get away’ from him, to pull his arms away from him to stand on its four legs, he is holding on firmly to this ladder that is trying to pull away from him with both of his hands; when I ask him, he pulls the ladder towards him, and a few seconds later, again when I ask him, he is pushing it away from him. And he did this a few times this morning. It’s all very gently and slow. But he is doing all this all by himself and when I ask him to do it.

Last year in neuro rehab in Pforzheim, in Germany, they had velcro gloves that held his hands to a stick because he could no hold it himself. Rather than him moving it, a therapist moved it for him. Today, he did all these movements absolutely and completely by himself. Check it out yourself.

We did this today because I wanted to do something different with Pádraig, to keep his interest going, to keep him motivated, and to allow him to show us something new he could do. I remembered that they do something similar in Pforzheim. Active movements. Voluntary movements. Movements that have some kind of purpose. I have never seen anything remotely similar here in Ireland, nor has any physio ever proposed anything anywhere even remotely similar as an exercise for Pádraig.

Now I ask you – why is that so?