Today was a day of making new friends, and meeting an old friend.
I went to Germany for the day, something I don’t remember I’d ever done before. Imagine, traveling a 1000 kilometres one way in the morning, and the other way in the evening. It cost slightly more than a return ticket with Irish Rail to Limerick.
I went to visit a place in Unna-Königsborn, a small town near Dortmund, where the regional government with the support of non-profit health care providers had decided 18 years ago to establish a “Modellversuch” (a pilot project) to find out how young survivors of brain injuries could best be looked after. I met their care lead, their social worker, their CEO, and their music therapist (the first music therapist I ever met who had a PhD). I learned so much today that it is hard to summarise it in just a few sentences. What they do there really touched me – because it was not about intensive neuro rehabilitation the way I have learned to think about (although there is a lot of therapy going on). It was not about the progress individuals make with the right help and support (although many injured there have made tremendous progress, even after many, many years). I was about a life in dignity and respect, about truly putting the person at the centre of all activity, about basic human rights – not matter whether a person was making progress, or whether a person remained in a state of a low or very low level of consciousness. It was about the idea that humans are not just created equal, their life and their rights remains equal – even with a very severe brain injury. About the absolute and categorical right to live their life as humans with all the help they require. Their was a deep sense of humanity, of true care in the most simple and at the same time the most complex way, of what I would consider to be deeply christian (or whatever other humanitarian believe system is closest to you). I looked at videos where someone with a tracheostomy stopped breathing for more than 40 seconds and started again, when I asked “where is the oxymetre – his oxygen levels must be dangerously low?” and got the answer “what difference would that make?”, when I saw the man recovering, stopping again, recovering, with no panic or obvious fear. I saw a video of the same man a year later playing a drum. Yet another year later having a conversation with his music therapist. I saw another young man being washed – not primarily to be washed (“he wouldn’t get that ‘dirty’ being in bed”) but to experience, to feel his body again, bit by bit. I saw and heard about people making dramatic progress even after 15 years – for no apparent reason; about others who didn’t – for no apparent reason. But all were treated like humans, never being ‘maintained’; all dealt with the utmost respect and dignity, participating in life. I heard about how the core concepts of the UN Convention of the Rights of People with Disabilities (CRPD) are realised, those of inclusion and participation, and many more. It made me think that this is what forms the core around everything else can be developed, the core that has to be got right before even thinking about anything more ambitious and complex.
Today, I found new friends who will join the An Saol Project. They will help, advice, share their knowledge and tremendous experience.
Today, I also met an old friend, by accident, one of the ‘original’ Germans in Ireland, someone I had not seen in decades. We had a bit less than an hour in the airport before our flight brought as back to Dublin.
Today was a day that really opened my eyes and mind, and I wish I’d have been able to share this with the professionals looking after Pádraig and others in his situation. I promised myself that we will one day and was over the moon when my new friends promised me to share what they do with us, to talk to us, to provide us with training and a deep insight into their work.
Hospi-Tales 
Reinhard, thank you so much for your writing. Your time, dedication and efforts bring to us, your readers, knowledge and hope that we are not aware of and that is most welcome. Your post is entitled ‘Inclusion’, and it’s brought me inspiration. I’m so heartened, and relieved, to hear that actual patient-centred care exists in the medical world, somewhere. You’re absolutely right that a person’s right to live, and to live and be treated with dignity and respect is a fundamental and at the core of everything. Even though the words are used and printed on paper, I more often than not don’t actually see it in practice, nor even properly conceived of in the minds of those at the forefront of providing care. Which baffles and angers me. Thinking with care entails empathy, compassion and creativity because everyone is different, and I am so heartened to hear of this group in Germany who sound like they do all these things. Fantastic that they are a part of An Saol. They are a part of An Saol, and An Saol exists, because of your time, dedication and efforts. Thank you Reinhard and family.
What you are saying, Ting, is what should be the force driving every carer, but especially those working with persons who have a severe acquired brain injury and might have difficulties to communicate the way we do with others. It takes experience and training and a capability for compassion, as well as an open mind to understand what someone is ‘saying’ who cannot talk. It was a brilliant day for myself yesterday too, because I learned that there is another angle to what we need to make available to all the people with a severe acquired brain injury. While a lot of the focus in neuro rehabilitation is on therapies, there is so much more to it. And it’s not always even about rehabilitation, but about what everyone calls ‘person-centred care’ but almost no-one practices. You are a shining light in the darkness showing all the people around you the way – keep doing it, as we all do, until we have convinced people of the obvious. I wish you all the strength you need every day!
Hi Reinhard – This sounds amazing but makes such sense – dignity + Respect = Inclusion, I agree rehab is one facet but dignity, respect and inclusion are what everyone deserves in life. It sounds like you have reached out and found some very inspiring people……well done this could help alot of people.
We leave Germany on Friday, it has been a great experience and Emma has gained alot from it. I have enjoyed living in Germany and we go home with renewed vigour!
I can’t believe that this isn’t something that all the professionals are telling us about, are teaching us, are instructing the carers to do. Why is all this something that we need to ‘discover’ as if it was some amazing out-of-this-world blow-me-out-of-the-water new discovery? ALL this is well known but, for whatever reason, not being practiced. That is the really amazing aspect of all this. Anyhow – it’s great they are on board and great we’ll be able to work with them.
Such a pity that you’ll be leaving just a couple of days before we’ll be arriving. I am so happy to hear that is all turned out so positive for Emma and for yourself. I agree that it’s not just the stay there ‘per se’, but the effect it has on your spirit and energy. We all need one of these vigour injections from time to time. – Still thinking about visiting you in the IoM in the summer:) If you and Emma pass through Dublin, let us know! We might see you on 18 June at the movie and afternoon ‘Mini-Conference’?