Stephen Hawking (I am taking his notes from the introduction of a book on occupational therapy, OT: “Meaningful Living across the lifespan” by Ikiugu and Pollard) noted some interesting parallels between persons with disabilities – and previously disadvantaged groups like women and black. A parallel, Joseph J. Fins also highlights in his seminal book “Rights come to Mind”.

Hawking then outlines what he things needs to happen to integrate persons with disabilities better into society and who the people are in his opinion who should make it happen. Further on, he highlights the role technology could play in this effort, and make a point I have been making in a more personal context: just because someone has a disability that doesn’t mean that they should be put to “carpet making and basket weaving” if they are mentally alive.

Understanding his remarks not literally but in a general sense it means, in my opinion, that persons with disabilities should be treated with the same respect as persons without these disabilities, to the fullest of their potential. There is no reason why someone, for example, acquires a brain injury should now have to live in different circumstances and in different company, and socialise differently than they did before – unless there are very good reasons for this.

Here is a picture of the page quoting Hawking, and below a transcription of the text, in case you find it hard to read.

“Now, however, people with disabilities and other previously disadvantaged groups, such as women and blacks, are demanding that they should be able to play a full part in society. As I see it, your job as occupational therapists is to make sure that they can. I cannot say that professional occupational therapists have been much help in my case, but maybe I just did not encounter the right therapists.”

Hawking went on to suggest that:

“With modern technology it ought to be possible for many people with disabilities to lead a life in the community and to contribute to society. It is the task of occupational therapists to enable them to do this. The important jobs involve mental and organisational abilities rather than physical strength and dexterity. This is the direction in which people with disabilities should be encouraged rather than being put onto carpet making and basket weaving,  which are inappropriate  for those who are mentally alive.”

There is another parallel between persons with disabilities, and especially those with very severe acquired brain injuries, are being treated and how other previously disadvantaged groups like women and blacks were treated.

Unless you were black, you were probably not so concerned about the fact that blacks did not have the same access to education as whites. Unless you were a woman you were probably not so concerned about the fact that women were not able to vote. Unless you have a very severe acquired brain injury (or have someone very close to you with such an injury) you are probably not so concerned about the fact that there is scientific evidence suggesting that 60% of persons in Ireland are misdiagnosed as being in a permanent vegetative state, when they are, in fact, conscious, and that this mis-diagnosis is used as an excuse, in my opinion, to deny these persons their basic and fundamental human right to a life, in dignity and respect, and, instead, to maintain them on a very basic level with a provision of “hydration, nutrition and medication”, telling parents to “face the facts”.

What we are facing is a human rights campaign highlighting the fact that persons are left behind. That they are abandoned. Based on the recommendation of many professionals, therapists and consultants, who are, at best, mid-guided. And based on our compliance.

“I’m betting he’s going to swerve first”, said Phil in Groundhog Day as he was driving down the railroad tracks toward an approaching train. It’s something that would never happen. In real life. Nobody would drive down the railroad tracks and trains would never swerve.

Pádraig tried out a gadget today that supports his arm movements. He initiates them and the support structure helps him to move his arm – for example to mobilise his arm or just to take a Pringles and stick it into his mouth.

Never saw one before, newer tried one before.

To me, this is a little like the oncoming train swerving to avoid a collision… Magic. I’ve learned never to be happy with what I know. Or to assume that what I know is what is possible. Anything is possible. Dreamboaters!

Pá,draig’s OT found this in her daughter’s drawer for things she isn’t using anymore but  could and should be used by somebody else. Apparently, and who would suspect this, it’s a cube. Or rather, with the necessary skills, one can re-assemble this into a cube. I tried a few times and reached a point when I thought: it’s not really more time I need. It’s something else…

It reminded me of a situation, maybe a year or two ago, when the answer to our concern about carers transferring Pádraig into or out of his wheelchair was that maybe not just two but three carers were required to do this transfer. It was clear to me, and I made that very clear to the agency at the time, that more people, numbers, were not the answer in this case.

There are times and occasions when less is more. And rather than numbers, skill is required.

Should Pádraig and I ever managed to finish that cube, we’ll post a picture. In the meantime, his therapist said, Pádraig should use it, together with many more items of the widest variety, to wake up, activate, and use his fingers and hands. Feel different structures, weights, fabrics ….

Another absolutely amazing things he did was swinging on a special swing suspended from the ceiling – one in a banana shape, and there was another (he didn’t try): a square board suspended at its four corners. Amazing, because – and who’d ever thought about this – if you are sitting in a wheelchair most of the time, you’re never exposed to the sensation of ‘swinging’ your body over the ground. Something people who walk do all the time. Think about it! It’s a type of sensory deprivation that isn’t so obvious.

On a different note.

Figure this: a few days ago, the Neurological Alliance of Ireland issued a news release stating that as of June 2018 over 4,000 people are waiting more than 18 months to see a neurologist. As a reminder, to my knowledge, and I am open to correction, the National Brain Injury Programme at the National Rehabilitation Hospital (NRH) has no neurologist, nor an EEG.

And last but not least.

Just came across a German band from Hamburg, I didn’t know. It’s called “Kettcar” and they have a new song out called “Trostbrücke Süd”. Here is an amateur but pretty cool live recording of this song.

Life is easy in Eiderstedt, in the North of Germany, close to the Danish border. Music is loud, you can choose between Bratwurst or Currywurst, a beer and a short (‘Kurzer’), and only pedestrians are allowed passing through narrow spaces between houses.

This is Germany’s second smallest city, Garding, on a Tuesday evening, just a few hours before it gets really packed and mad. All in a straight and simple way. People don’t talk much here. They take life as it is. Wat mutt, dat mutt. Whatever will be will be.

And Pádraig was right bang in the middld ov g all!

The general idea is that whatever happens to your feet, it can be felt and is connected directly to the rest of your body, and especially your upper body, including your face.

There is an absolutely brilliant OT in the North of Germany, just a few kilometres down the road from Tating, who has seen and worked with Pádraig a few times now, each time over a number of sessions, trying out slightly different approaches, most of them based on the methods and approaches developed by the Argentinian rehab doctor and specialist Castillo Morales.

Today, she worked with Pádraig’s feet, starting with a huge box full of cherry cores (or: Kirschkerne) – which are sold in big bags on the internet.

It’s incredible to see what those cherry cores can kick-off, how they feel on your feet, and how they can work not just with your feet, but with your senses. When Pádraig moved his feet through those cores, when he grabbed them with his hand, held on to them, and then opened his hand slowly to let them ‘rain’ back into the box – he was wide awake and alert. You could see the effort it took him to move his feet through the cores, how they stimulated not just his feet, but how that stimulation worked its way up through his whole body. It was like magic.

And as many of the most effective things we have encountered: it couldn’t be simpler.

The northern coast of Germany is, largely, a national park. They must have got a special dispensation today. Or, they might not have been aware that noise can pollute the air as badly as smoke emissions.

We went up to St. Peter-Ording Bad today, to go for a walk through the dunes up as close to the North Sea as we could. Up to the restaurant Pádraig wanted me to buy some years ago. The one that his aunt and her husband ran for more than 20 years.

The famous restaurant chain “Gosch” managed to get a license to set up business right on the dike a few years ago, with a shop owned by the town’s mayor in the annex. In the summer, they organise life music right in front of their premises. Not so bad, if they managed to control the level of the sound a little. Today, we could hear it right up to the sea front, about a mile. So much for the famous national park, protection of nature, and a Helene Fischer tribute band entertaining the masses.

We’re still tired from the journey, but recovering. Pádraig likes it up here and tomorrow we’ll start visiting the auld haunts, places where we have spent summer day together for decades.

For me, the North is full of ghosts. My mother, my father, my sister, her husband – all present though all long gone. It would have been my mother’s 95th birthday today, a day we often celebrated up here with “Kaffee und Kuchen” and a big BBQ in the evening. With our kids coming up to wish her well. All past. All present.

First thing this morning, a car check.

I became clear immediately that half the back right hand tyre had disappeared.

So it was ‘just’ a matter of buying a new tyre – which turned out to be much more complicated than anticipated. In the end, someone really nice drove us an hour East, where a tyre chop, out in the middle of nowhere with one foot in The Netherlands, had the required size.

We made it to our destination – but now, I’m so tired, I’ll have to go to sleep…

We said good-bye and thank you this morning to Pádraig’s nurses and therapists and doctors. We had a tremendous time in Burgau. My head is still spinning with all the new stuff and ideas we encountered. So much to digest…

We left, I think, just after 2pm and expected to arrive in Münster at around 8 to interrupt our journey to the North Sea.

We arrived just after midnight, following traffic jams caused by cars broken down in ad                                                                                                                                                       roadwork spots, blocking lanes, and accidents that were so bad that the police closed the whole motorway. Drivers and other accident professional can no ew

And then, about 20km from our guesthouse, a huge bang, so loud that we thought a tyres must have blown out. But it wasn’t a tyre.

We made it to the Gästehaus. Really slow. Just about to go to sleep now. We’re completely exhausted. Will check the car tomorrow morning…

And we’ll stick with the ‘Rettungsgasse” – something through and through German!

Don’t you know I’m still standing better than I ever did, looking like a true survivor.

I can’t resist the rhythm of this song. Each time I hear it, it makes me dance. In a kinda funny way. Try it yourself. Listen to it. And if you want to watch the most wonderful weird amazing and strange video while listening to the song, choose this version.

Pádraig has been (still) standing a lot over the past years. Because standing is one of the most important activities for human beings. Ultimately, it keeps us alive. Looking at it the other way ’round: if you don’t stand and instead just stay in bed, long enough, you’ll die. It might take 7 years or so. But you’ll most definitely die. It’s that simple.

The other day, Pádraig and I were standing. Looking like a true survivor, he was.

And then, for the first time, Pádraig stood again, this time all by himself. He had some help and support to do so, we were close by to assist when it was necessary, and he just managed for a short while – but he did it. He stood there without any of us helping or assisting him. Nobody to lean on.

Pretty spectacular.