Men wanted for hazardous journey!

Every day counts – and today was an absolutely brilliant day!

I’m shattered.and overwhelmed.,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

This morning, Pádraig had a visitor who brought Pilgrim’s Passports and Connemara Shells, the likes carried by many pilgrims on their way to Santiago. A native Irish speaker, he chatted to Pádraig and got one of those big smiles reserved for very special visitors. – All part of the excitement of going to Dingle today in order to get ready for our 2-day walk tomorrow morning.

In the meantime, we finished our 4 1/2 hour drive across Ireland and arrived in Dingle. We just missed a lady working with the Kerry Camino Committee who left all the information for the Kerry Camino for us. Also caught up with family who had helped to arrange accommodation for Pádraig and us here in Dingle and had a great evening meal in the Pub.

Can’t wait for tomorrow!

Check out and share the Facebook page for Pádraig’s walk.

You must have been waiting with almost unbearable curiosity to find out which word Pádraig wanted to spell yesterday. I must say that I thought about it all night. A German word, beginning with “B”.

So, the first thing I did when his last PA had left this morning, was to sit down with Pádraig to spell the rest of the word.

Ok, most of you know Pádraig or have got to know him a little through this blog (I hope). That’s why expect that you will not be too surprised to hear that the first thing Pádraig told me was that he didn’t want to spell a German word beginning with “B” anymore. He had changed his mind. The word was to begin with an “H”.

It was so funny. It was one of these moments that I felt really really felt so close to him and knew he was there right beside me.

The next letter was an “I”. I then noticed that he had a bit of a problem distinguishing between the “M” and the “N”. So I asked him, could I guess the remaining letters – which is how we spelled the word “Himmel” together.

If you have a bit of German then you know that “Himmel” can have (at least) two meanings: ‘sky’ and ‘heaven’. Pádraig confirmed that he meant ‘sky’ and told me that he was wanted to see loads of it today and during our walk along the Kerry Camino on Thursday and Friday.

We must put the rights of disabled people at the heart of our society. We cannot, and must not, allow the next twenty years to be a repeat of the past.
David Isaac, chair of the EHRC

What David Isaac, chair of the British Equality and Human Rights Commission, said at the launch of the most comprehensive analysis of the rights of disabled people in Britain echoed in my mind all day. He added, “They must have the same rights, opportunities and respect as other citizens.”

Ok, I thought, fair enough. But (and we all know there’s always a “but”) – But what if they are treated as if they were already almost dead? What if more than 60% of them are diagnosed wrongly as being in a permanent vegetative state, without conscience? What if the only treatment afforded to them is water, nutrition, and medication? What if families are told not to waste their hard worked for fundraising money on their loved ones but go to the Canaries instead? What if they are told by the experts that therapy would be wasted on them?

Would it be time to “trying to petition for improvements”? Or should we bring a case to the United Nations Commission on Human Rights, the European Court of Human Rights, or even an Irish Court?

I know – improvements are coming. But: for those affected every day counts.

And at the moment we are loosing too many of these precious days. I am not seeing progress being made, agreements being honoured, phone calls, emails or texts being returned, despite an agreed pilot project.

Es ist zum Mäusemelken!

Pádraig did it before, but not at home: walking. It was only a few steps, ok, but so what? I was helping him to stand, his physio helped him to move his feet. Magic!

Pádraig had done this before too: spelling. Today, though, it didn’t work. He wanted to spell a word. We agreed on that. We used the Tobii to read him out the frequency alphabet. Apparently, the first letter of the word he wanted to spell was not on that list. I asked him, should I read out the list. He said yes. But apparently, I did not read out that letter he was looking for. When I asked him, should I read the list out like the ‘normal’ ABC alphabet, he said yes. Again, the letter was not there. I was running out of options.

Then I remembered how much Pádraig disliked, well ‘hated’, me speaking English. So I asked him should I say the alphabet in German. He said yes and Bingo – the first letter of the word he wanted to spell was “B”. I was thinking: how stupid and slow had I been not seeing the most obvious barrier for him to spell that word he wanted to spell! – Then the door bell rang, Pádraig’s programme moved on and I pleaded with Pádraig to remember his word until tomorrow… We’ll give it another go. Auf Deutsch:)

I very much respect the work of the Neurological Alliance Ireland (NAI). In fact, the An Saol Foundation is a member of the NAI. I also very much respect the work Dr Mark Delargy, Clinical Lead at Ireland’s one and only Rehabilitation Hospital has been doing over the past decades.

Today, the NAI posted a video in which Dr Delargy expresses his support for the NAI campaign: We need our heads examined. This is what the country’s leading rehab consultants need to do: publicly support campaigns like that of the NAI.

Dr Delargy says there is a ‘disconnect’ in the system; that patients in need of neuro rehab experience ‘severe and prolonged delays in achieving access to essential rehab services’. He also says that patients do not get access to the kind of therapy they really need, that even the NRH experiences ‘great difficulty providing the international level of intensity’ and ‘difficulty to provide it soon enough and for long enough’. He concludes that on this background he is happy to support the NAI’s campaign ‘trying to petition for improvements’.

I really respect Dr Delargy’s work and his decision to do this video, and sincerely applaud it.

But me being who I am, I do not understand how he can say what he is saying the way he is saying it. – You know what I mean. What he is saying about rehab services describes a national scandal! And the conclusion, in my mind, after decades of neglect, needs to be more than trying, to petition, for improvement.

There are also a few things the NRH itself could do immediately to improve this untenable neglect of those requiring rehab:

1. The specialists in the NRH could state what the “international level of intensity” should be for rehab and what it is now – in the NRH and in the community (it’s very close to 0 in the community at the moment). That would provide significant support to those who are campaigning for more resources to be made available and for existing resources being used more wisely.
2. The NRH also could, what am I saying: it really has to make available equipment, especially highly specialist equipment, that has been donated to them by generous fundraising, to those who need it – even if the NRH itself cannot offer treatment on this equipment, other nonprofits, like An Saol, could, out of hours, even on weekends.

The above are just two simple examples.

Above all, however, we need consultants to lead. Not to tell parents any money spent on physiotherapy for their sons and daughters is a waste. But to encourage and support them to do whatever it takes to provide a quality of life for those with sABI, something they have an absolute, fundamental, universal human right to enjoy.

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.