The following post turned out longer than expected, and might not be everybody’s cup of tea nor glass of wine…

If you don’t feel like reading tonight, go straight down to the end of this post and learn how to become a good German in ten easy steps. It’s great fun (and so useful these days that I was tempted to mail it to Varoufakis, just in case:)

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There are evenings when I think there is nothing worthwhile to write about. (I hope you haven’t noticed:) There are other evenings when I am so tired that I find it difficult to put coherent sentences together. (I’m sure you’ve noticed that.)

Today, for whatever reason, I really want to share with you what I think about two really important questions. I want to avoid the incoherent sentences produced by a tired mind and late night writing, so I am starting to write a bit earlier. It’s just after noon, Pat has left to meet up with other mothers in a big rehab centre, Pádraig is having his nap….

What are these questions? –

How can I change the attitude of the neuro rehab health establishment in Ireland?

What is more important – to be pragmatic and take what we can get thus gaining in a material way, or to insist in what we believe is right, running the risk of loosing out in a material way, but affecting sustainable long-term change.

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The first question is on my mind because of remarks made by people responsible for the system over the past one and three quarters of a year – again and again.

To give you an idea, here is a selection of what has been said by health officials and leading doctors (quoting from memory): our care and rehab for persons with severe acquired head injuries here is as good as anywhere else in the world – no need to access services in other countries; instead of wasting your money on expensive treatment why don’t you use it to look after yourself, spend your money and go on a relaxing holiday; don’t worry about dropped feet, bed sores and other injuries – those can all be looked after and fixed if their brain recovers; there is no requirement for immediate rehab, better wait until they’ll have recovered a bit better to take full advantage of it; three months of rehab is sufficient; given the limited resources we have, we cannot waste them on persons with very severe acquired brain injuries; we understand your concerns but we have to be realistic.

Reality, our experience and that of other families we know, does not support these outrageous and ridiculous views of the “experts” – neither does best practice nor does the UN Convention on the Rights of Persons with Disabilities. Can we change these views, and how?

We go public with everything we’ve got.

This includes telling the public what health officials tell us parents at meetings when they are supposed to support us and help our children: that they think it’s ok for young people with very clear therapeutic needs to stay for months and years in acute hospitals, collecting one injury after the other. And to put them into nursing homes thereafter. With an hour or two of therapy. A week. That we should use the money our friends and family fundraised to go on a well-deserved holiday, instead of wasting it on care (abroad) that won’t make a difference anyway.

We can show how our children improve when they receive the right care and therapy. We need to do this with confidence and without fear of loss of “privacy”. (I know, this is a difficult one as we are taking decisions on behalf of our children’s privacy.) And – even if our children’s condition did not improve, they still need the care and attention any human being (with several decades of life ahead of them) deserves.

And play Mr President by Pink to them again. And again. And again. “What to you feel when you look in the mirror? Are you proud?”

Change will not happen quickly. But it will. Because nobody in their right mind can allow the situation as it is allow to continue.

If I think back, I had not the slightest idea of what ABI even meant, never mind what effect it has on persons, or how it should be treated. People need to know. Because it could happen to you tomorrow.

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The second question is on my mind because it’s one we are faced with on a regular basis: Do I accept an “arrangement”, do I “make a deal” because that’s the way it works? For example, do I allow my politician to push my child ahead in the queue (at the cost of another person)? Do I accept a completely inadequate service or financial compensation because it’s better than nothing? – Or: Do I know what is right and what is wrong, and do I insist in what is right? For example: Do I risk to annoy a consultant because I insist in what is right, to a point where I make a complaint or take a legal case? Do I accept one hour of therapy, or some financial compensation although I know this will never be enough?

What is more important for us and our cause? To be pragmatic or to insist in what is right? To get a quick fix and look after ourselves  – or: take responsibility, follow the “categorial imperative”, and invest in change – even if that will not come tomorrow. There are many examples I could think of where people have been told: “it’s not worth it”, “be realistic”, “don’t you know how this works”, “play the game”. It has always taken the courage of people who were not afraid to stand up to be counted, people who were not afraid to loose if human rights were at stake, people not afraid of being looked down upon as “innocent idealists” – it took these people to make ours a better world. I would feel infinitely more comfortable in their company than in the company of the rich, successful dealmakers without principles.

We are proud, we are not helpless victims deserving charity, we know what is right, and we will insist in our rights.

It’s the time of the year when we are reminded of what happened to a young man with long hair and a beard who did not “make deals” – even when his life was at stake – a man who told the powers to be that there was another way. He insisted in doing what is right and rejected what was wrong. He had a short, difficult live and, eventually, ended up dead on a cross.

I’m thinking of the lyrics of Apparatchiks by Paul Noonan and Lisa Hannigan:

These are the punches that we roll with
This is the shit
When it’s so much easier to stomach it
I’m downwind of you

Laugh now but one day we’ll be in charge

“House always wins”? – No, it doesn’t.

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Finally, if you made it to here, you deserve something lighter.

I cam across –

 

 

 

 

 

 

 

I am sure you can’t wait for step 2!

One step at a time!