One of the good things here in Pforzheim is that we meet many other families with family members who have been recovering from different levels of brain injury over different periods of time. They come from different parts of Germany, from different background, and can all share different types of experiences.
One really interesting approach to assisted living we heard about today was from a family living in a little village of less than 3,000 people where they have built to houses for ‘Living across the Generations’, a “Generationenhaus”. The idea is that the very old people live with the very young and everybody in between and everybody contributes what they can to each others lives. People can either buy or rent apartments which are all separate but close to each other.
Someone else responded really enthusiastically when I told them about the idea of ‘An Saol on Sea’ in the Bray Head Hotel (still a dream:) saying that you could sell or rent out apartments and even run part of the building as a hotel with a restaurant, supported by the work of people with handicaps, each contributing what they can to the running of the place, feeling proud and fulfilled by getting some ownership back over their lives.
When I said to yet another person how difficult I find it to understand that you need an international expert in severe acquired brain injury to justify the provision of what the HSE and the RCPI call the Wonder Drug, i.e. physical exercise, for sABI survivors – when they are trying so hard to encourage everybody else and when they are really doing their best to convince everybody else of the benefits of this ‘wonder drug’ – that person said: there are studies to show that life expectancy is reduced to maybe 10 years without rehabilitation, and increased by maybe five additional years with just some pulmonary physio. Imagine what you could do for a person’s quality of life with an adequate programme of rehabilitation! Everybody knows this, but not everybody agrees that it is in society’s interest that survivors of sABI survive much longer – apparently, they cost too much money to society. Think about it. The right of a person to live subject to budget.
Article 2 of the European Convention of Human Rights says: “No one shall be deprived of his life intentionally”. Article 3 of the Convention says: “No one shall be subjected to torture or to inhuman or degrading treatment or punishment.” I’d look at the denial of my right to live and the right to receive treatment that allows me to live in dignity and with respect as the ultimate “inhuman or degrading treatment”, even as being intentionally deprived of my right to live. When you are abandoned in a bed there is no other outcome but early and untimely death. Being left in a bed to die when you should and could have your life ahead of you cannot be ethically (nor, I’d say, legally) justified, not even by a lack of ‘value for money’ in a value-free society.